tag:blogger.com,1999:blog-47581045752411464622024-03-13T02:37:53.714-07:00FriendsofCaseyRecessive Dystrophic Epidermolysis Bullosacaseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.comBlogger22125tag:blogger.com,1999:blog-4758104575241146462.post-88964442741102046232012-03-18T08:17:00.005-07:002012-03-18T08:22:30.884-07:00Hi All! March is here and spring is upon us...The warmer weather always makes me feel happier....<br />
Anyway...February was a challenging month for our whole household. EB really took it's toll on us. Casey was sick. He got, not one, but two stomach viruses last month. One is rotten but two is unbearable. Zach got it, I got it...and John caught it. I don't know how Becky escaped it. Vomiting for days straight...and then after one week, going into it all over again was too much for him. He blistered something again in his upper airway (epiglottis probably) and he has so much trouble breathing. It was a very scary thing this time for me. One day he had so much trouble breathing with the cap on that we had to finally take it off. ..and it remained off for five days. During this period of time, he decided that he was having so much trouble even with the cap off that he kept pulling his trach out..He'd start gasping, grab at his neck, pull all the dressings out from under the trach collar and rip the trach right out in a panic. And it was a wrestling match with him to get it in...rolling and fighting. I tried the calm approach...give him a second to calm down...put it back in at<strong> his</strong> pace...(usually he doesn't need it to breath so I have all the time in the world) but this time, I took my time and he went into a panic kicking and hitting me and turning a greyish color in the lips...I eventually got him to calm down every time. It was a hard period of time and he had to sleep in our room in a toddler bed till the whole trouble stopped. I was afraid to put him in his room alone at night. I have a pulse ox, but it doesn't really serve it's purpose. We have the special velcro probes but if he sees it on, he pulls it right off...and if the rare occassion comes where he forgets it's on it beeps ALL NIGHT LONG off and on due to poor contact. His fingers are all scarred.. It was weeks worth of vomiting, bleeding, gagging, swelling, nebulizers and steroids....he couldn't hold down food so his skin looked just awful. He cried and cried about his mouth and throat hurting. We had to break out the pain meds... I think it is unfair that my four year old has now taken oxycodone. It's rare we can't manage his pain without the tylenol or motrin but this time he was in severe pain and it was not fair to allow him to suffer if we could "fix" it. So he got two or three days worth and we put it away again..hoping we won't have to take it out again until he is six!!! Thats what it's there for though and when he's in pain, I'm not afraid to use it. He was dried out so his eyes hurt..and he rubbed him till he ripped the skin off the eyelids and his nose.. I don't know how we were spared an abrasion... notice how I say WE...that's because everything that happens to<strong><u> Casey</u></strong> affects our whole household. I'll get back to that point later......<br />
Well this episode with the swelling and breathing has destroyed all our hopes of removing Casey's trach anytime soon. It was just awful. We also learned that he should have a larger size trach in order to manage situations like this one..I'm going to talk to his surgeon next time we see him. Score one for EB.<br />
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Like I said before EB affects my whole family. Yes, <strong>Casey</strong> is the one who actually has the condition but the effects of EB trickle down to the rest of us in the house and it's as if we ALL suffer from EB. I'm ashamed to admit that sometimes while my poor beautiful boy begins vomiting or crying from an injury.... all I can think of last month was poor ME.. that's right...I'm feeling sorry for myself...ex: once again I'll miss breakfast with a friend, etc....he's the one sick and I'm concerned more about how it will affect ME and my life. I'm ashamed of myself. But I promised you all, that I would write honestly and from the heart and that's where my thoughts are this month. Don't judge me... I envy the families of special needs kids that can juggle it all and never get depressed..I don't think people realize the stresses EB families face on a daily basis (or any family raising a special needs child)...what we all give up to raise our child... and how we are pushed beyond our limits daily. I can't tell you how many social events my husband and I miss, how few times we get to go out alone... birthday parties zach and becky don't get to go to, homework I can't sit and do with my older son....family and friends we just don't have time to get together with, friends we have lost and time I miss with my two year old while tending to Casey. Not to mention financial stresses...(the cost of traveling for procedures, things not covered by insurance, work missed) It's socially, financially, physically, and emotionally exhausting and it's hit my family hard this past month. I'll just leave it at that. I truly hold dear to me the people in my family and my close friends who go out of their way to help out..whether it's family who will move an event because Casey is ill or changing the location so we can be at home. ..or friends who will stop by and bring coffee or read to the kids for awhile while I do some chores. I always wondered how the rest of them could be so self absorbed.<br />
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Last month I was asked a few questions by readers that I thought I'd address..I've been asked about my thoughts on "handwrapping". Since birth I have been very protective of his hands. It may be unrealistic of me to think I can prevent the webbing/contractures of his hands but I want to at least say I gave it my best shot. Idon't think there is a right or wrong method of thought. As of right now, he has perfect hands. No contracting, no webbing and full function. As a baby I always individually wrapped each finger..we're talking just a few months old ..and I did that until he was about three.. It was time consuming and exhausting but worth every minute of it. There has never been a time bandaging has prevented him from using them for anything he wanted to. So those of you who prefer handwrapping, you can rest assure your child will not delays because you wrap his hands. Casey could put a pea into a tiny hole even bandaged up. Once he turned around three, he began ripping them off ..the minute I put it on, he'd rip it off. I eventually forced him to keep it on,(after all I was the boss) only to find out that it blistered his fingers at the joints more than if it was left unwrapped. I tried half way up, two thirds of the way up each finger leaving the finger tips open at all times for sensory input. He hated it and reasoning with a two year old wasn't worth it. So I tried just wrapping his palm and his thumb ..(I figured at least protect the thumb webspace) and leaving his fingers open...only wrapping when they were injured. and this is what I still do. I am what you would call a situational wrapper... If he is home doing an art project, playing a video game I think it's beneficial to keep them unwrapped..stretch them out..get some air....If he is climbing on the swingset or riding his hotwheels I will wrap them up. His occupational therapists have always worked, since birth, on activities and exercises with and without the wrapping ..and he has been trained to use each hand equally in case one is hurt. When he saw the hand surgeon this year, we were told his hands were perfect...and he suggested we continue with the boxer style wrap but weave gauze and/or transfer between the fingers to put pressure on the webspaces every day. So, we are following his advice and it's been working out great. It took Casey awhile to get used to it but now he's very cooperative about it. That's not to say that I may get concerned and go back to wrapping each finger in the future...but Casey is one of the kids whose fingers get blistered up worse wrapped in the gauze and that defeats the purpose of wrapping them up. Right now his palms are protected from falls and his webspaces are guarded. It's the best alternative for now. I don't think I'll ever be comfortable completely unwrapping his hands for long.<br />
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I was also asked about things I add to the bath...I don't add anything to Casey's bath. I don't use bleach or vinegar. I'm just not a believer in the bleach. Now I know it serves a very important purpose in many people's situation..but since you are asking me what I do for Casey, I'm just telling you what is good for HIM...not what is good for everyone else. I feel bleach does not discriminate between good and bad bacteria..it kills it all....And since he's colonized with staph, what good will the bleach really do. It's also a chemical..and I am one of those chemical free nuts...I'd never use it routinely, but that's not to say if I had a terrible problem with bacteria and infections that I may be running to stock up on it despite my feelings. Luckily it hasn't happened. The few times as a younger child he used bleach in the tub, he got itchier and redder and his skin got drier even with intense rinsing after the bath. I'm not opposed to the white or the apple cider vinegar but I've just never had to do it. When at all possible he uses chemical free, dye free, preservative free organic things only, so sitting in a tub of chemical filled water just isn't within my comfort zone. :)<br />
The boys both have a birthday coming up in May. Casey will turn five and Zachary will turn 11. I've promised casey a party with all his school friends. This will be the first one he's had that I'll let him have his friends to. It's amazing how time flies. Zach is still playing his trombone and he's getting very good at it. He remains on the honor roll and got a perfect report card. The best report his teacher has ever written in all her career. He's reading and writing on a level two grades above his. Casey is going off to kindergarten in the fall. He has far exceeded my expectations for what he can do. I set my goals high for him and expected nothing less than outstanding from him. He is my wiseguy though. He has found a way to manipulate every girl in his class to help him with his tasks. All he has to say is "I can't do it" and five girls run to his side to help. I'm proud he can put on and zipper his own coat now. He has the best teacher in the world ..she fosters independence in him in a loving way. Just what he needs. He's not all that interested in learning although he is very smart. He'd much rather socialize. and everything is a joke or funny to him. He is such a great spirited kid you can't be sad around him. Becky is a fiesty little one.. loving and beautiful...with a fiesty side...yeah..that best explains it. She's in this movie jag where all she'll watch is the wizard of oz...over and over all day long off and on...I used to love that movie..it was the special one we'd take out every spring and watch together..Now it's just played out. I can recite it word for word..literally..I know every word. Most day, Becky wants to be dorothy...then other days she wants to be a flying monkey...Like I said..loving and fiesty...<br />
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<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh39rK-anVu91m6rPEzk9PiZsuryARZsmN5fYr-CieElmz26jD9CPEEHcIDd74gS6bnlm412oGpLieQgjYOB_a-_ZEtk7EocVuPOlxjmrGmhncht79DasxN54iw2U9PfYfu2isdZAM_7ihK/s1600/IMG_4743.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img aea="true" border="0" height="200px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh39rK-anVu91m6rPEzk9PiZsuryARZsmN5fYr-CieElmz26jD9CPEEHcIDd74gS6bnlm412oGpLieQgjYOB_a-_ZEtk7EocVuPOlxjmrGmhncht79DasxN54iw2U9PfYfu2isdZAM_7ihK/s200/IMG_4743.JPG" width="140px" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvG0phxRjXqJr1eOLMkQxyi-aNk_ZQZ58uBpQDSFOnp8ZrDHeb85LViRbqgmawV9PEtAMSI6HyN2Hp-e37KuUMcPa3R8HnGjVzgjuyohuI8fgYPTz0SHU2kQGp5AuE043FhlDACiYWpIfu/s1600/IMG_4642.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img aea="true" border="0" height="213px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvG0phxRjXqJr1eOLMkQxyi-aNk_ZQZ58uBpQDSFOnp8ZrDHeb85LViRbqgmawV9PEtAMSI6HyN2Hp-e37KuUMcPa3R8HnGjVzgjuyohuI8fgYPTz0SHU2kQGp5AuE043FhlDACiYWpIfu/s320/IMG_4642.JPG" width="320px" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhowU1XPTmwfv8Ks4fXuUgHZVx2B25YDr0DprkSAsVoRI1TKFzvkNllZpWIV2AaEkKUqudWfwH_2z9soOfnGOc0Ixa_EtZliFmkrVL3a-nqGUA2tmQzPsRa1z9uT9PcS4aQGLMHh_hHMByH/s1600/IMG_4016.JPG" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img aea="true" border="0" height="133px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhowU1XPTmwfv8Ks4fXuUgHZVx2B25YDr0DprkSAsVoRI1TKFzvkNllZpWIV2AaEkKUqudWfwH_2z9soOfnGOc0Ixa_EtZliFmkrVL3a-nqGUA2tmQzPsRa1z9uT9PcS4aQGLMHh_hHMByH/s200/IMG_4016.JPG" width="200px" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><span style="font-size: large;">Hope March is a peaceful one for everyone....Hugs..</span></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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</div>caseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com2tag:blogger.com,1999:blog-4758104575241146462.post-47402460379032561972012-01-25T17:57:00.000-08:002012-01-25T17:57:40.901-08:00Well, it's the end of January already. We finally got our first bit of snow..The kids have been looking for snow since september. They were so excited it was going to snow. Sending Zachary and Becky out to play in the snow is a no brainer...Allowing Casey to go out and jump around diving into snow pits and getting hit with snowballs takes every bit of strength and courage I can muster up. Before he woke up in the morning I had decided that Zach and Becky would go out, but I would bring a big pot of snow in for Casey to play with inside ..in our comfortable place..with spoons and bowls and all...I had it all planned out.. Until Casey woke up. He ran to the window smiling ear to ear. He gathered his snowman kit...put on gloves and waited by the door snowball maker in hand....and it was only 8am..... I knew right then that the plan of the snow in the bowl inside was no longer a feasible option. But my desire to protect him took over and I decided to try it anyway...... "casey..how about we bring a bowl of snow inside where it's "warm"instead of going out. He looks me right in the eyes with his eyebrows curled like the grinch....and says "LAME"..... "I am going out there"...... And that was that...and he had a ball...Here he is in the snow....<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj21q49ZYgy4n7n9R2piJm3v_wT0lUsJ1DdBJ0lqjn-pcia-ffryD04E1HACdKVC8cQgIhVj0wnZ4VMeYwE-GY15xgmcWZWckqbu5Q5I5CFxd5antF_pg9Dg_uI35AZXgn0CaLdC9gzyae7/s1600/IMG_4795.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" gda="true" height="320px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj21q49ZYgy4n7n9R2piJm3v_wT0lUsJ1DdBJ0lqjn-pcia-ffryD04E1HACdKVC8cQgIhVj0wnZ4VMeYwE-GY15xgmcWZWckqbu5Q5I5CFxd5antF_pg9Dg_uI35AZXgn0CaLdC9gzyae7/s320/IMG_4795.JPG" width="213px" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGFjhzZenPWVFbvojMwI1iVbBuuvOOsRWDygvu_xXaU0JLrlQtACdJ-Bz8H_5l5Pj5nG8RCDTzJjaWwEc3t6ZiZewEfV0L7rtH18I1JTaCpdITXO9C5McwJopxQ0DKiJZp6O7mejKDknxA/s1600/IMG_4806.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" gda="true" height="320px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGFjhzZenPWVFbvojMwI1iVbBuuvOOsRWDygvu_xXaU0JLrlQtACdJ-Bz8H_5l5Pj5nG8RCDTzJjaWwEc3t6ZiZewEfV0L7rtH18I1JTaCpdITXO9C5McwJopxQ0DKiJZp6O7mejKDknxA/s320/IMG_4806.JPG" width="213px" /></a></div><div class="separator" style="clear: both; text-align: center;">And here is his <strong><u>foot</u></strong> later that day....</div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisVIBH6SlgQO7ZFgf4AK7CP9I-10GQQynt6wVL8yyjWY4MraHitjBg__lUzvr9pikR6YKHHruB0HJpV7cZj7b2v6Y7uCxzeVpDFQQHxl8sMtPCrjST7W4ZOf5sDI-Z8lTR2FwidInEq1gN/s1600/IMG_4836.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" gda="true" height="213px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisVIBH6SlgQO7ZFgf4AK7CP9I-10GQQynt6wVL8yyjWY4MraHitjBg__lUzvr9pikR6YKHHruB0HJpV7cZj7b2v6Y7uCxzeVpDFQQHxl8sMtPCrjST7W4ZOf5sDI-Z8lTR2FwidInEq1gN/s320/IMG_4836.JPG" width="320px" /></a></div>This is a blistered foot we haven't seen the likes of in <strong><u>years.</u></strong> Was it worth it? I say NO WAY...If he had chosen the bucket of snow inside it would never had happened. However....When I asked <strong>CASEY </strong>if it was worth it, he said "It sure was..I hit zach straight in the face with an ice ball. Did you see that mom?" And from this I learned a lesson... The foot bothered ME more than it bothered HIM and he was the one that had to live with it! Playing outside..pegging his older brother with a snowball..experiencing the cold windy snow, being with the neighborhood kids, outside building a snowman was worth a blister to him. He is only four years old, but he says to me..I get blisters even when I stay inside....Point taken. He's wise beyond his years. I am sure the blister came from boots that were too big. I regretted putting them on almost the instant I did. I thought too big would be better than too small.. His feet were all wrapped up....but, he was walking funny in them and I should have taken them off ..I should have known better. For four years we have lived with this condition and I still can't figure it out...I still can't outsmart it. It's always the one in control.<br />
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Casey had a well doctor visit last week. He needed a physical for kindergarten. Can you believe he is going to be in kindergarten this fall??? Where does the time go? We were happy to learn that he gained 2.8 pounds. He's 42.8 pounds now and 44 1/2 inches. His doctor thought he looked better than he has ever seen him. (He didn't see the foot.) But with the exception of the foot now, I'd agree with him. We are so blessed that he does well enough to enjoy so many "normal" things in life. He got three vaccines...mmr, chicken pox and hepatitis A..I didn't even know they were vaccinating for hepatitis A.. I told him he was so brave getting three shots....He says "no I wasn't I cried like a little girl.." Casey has had so much trouble falling asleep and staying asleep the past few months. It's affecting our whole household. I don't know what is keeping him up..pain? itch? Doesn't seem to be either one...I've tried antihistimes, melatonin, pain meds...music, dim lights, reading stories...I'm off to get a yoga tape from the library now. I'm desperate.. None of my kids need alot of sleep. I seem to need more than they do. If one goes to sleep at 11pm and one gets up at 7am..where is MY time? It's catching up to me. Not to mention John and I have not been out together since october. (our anniversary). This year we have vowed to get out more often. We have nursing and we have family that are capable of caring for him so I'm not sure why we haven't made a bigger effort. His nurses have even volunteered to take him or the others to their house overnight..unpaid..just as a favor. so we could go away overnigt....and Yet I have never taken them up on the offer. <br />
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Last week we had one of those "I hate EB" weeks in my house. Casey scratched his eye again. We spent two days in the dark..eyes closed ..crying...We decided this time to use the dilating drops we were given at the opthomologist. I don't know if it will happen with every scratch but I put them in his eyes and he screamed it burned...and he continued to scream it burned for close to an hour until he cried himself to sleep. We also battled penis blisters that week as well. I won't go into detail, but I am regretting not circumsising him when he was born..quite frankly I don't think I could do it now that he is almost five. Then again, if it's not done does the skin protect it a bit ?? I believe the jury is still split on the circumsizing thing. It may just be a matter of personal opinion.<br />
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Next week we are meeting with the elementary school Casey will be attending in September. I don't anticipate any problems. Zach spent six years there and they are excited about Casey coming...Anyone with any tips on elementary school and EB kids can feel free to email me with some advice. I can imagine it's more demanding than preschool. <br />
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Zach is doing good. He's growing up so fast...well, growing up in AGE ....I'm still waiting for his maturity to catch up to his age! He made honor roll this quarter, still plays in the honors band and is active in student council. He really is an angel. Becky is well too. She is incredibly smart. I am going to enroll her in a summer program for two to three year olds in the preschool two days a week just so she can be a bit challenged. I mean it...man is she smart. She is a very strong willed little girl who has both a halo and a pair of horns ..and you never know each hour which one she is going to break out. She has the most loving relationship with Casey. They are the best of buds. Becky has always been a caretaker. She likes to help me wrap Casey up and when he's crying because we are doing something that hurts him, she climbs up next to him and hugs him saying "don't cry becky's here". And when Casey is hurt he asks for his big brother...Casey has already informed me that when he gets his own apartment he is going to call Becky to help him with his bandages not me. I'm sure he will and I'm sure she will always go! We saw a great show on Storm chasers about a girl with EB who chases tornados...I had Casey watch it to show him he can do anything he wants..and MAN this girl was <strong>totally awesome</strong>!!! Casey tells me he's not chasing tornados...."He'll be hiding in the basement"! I can't say I blame him.<br />
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Well, that's about it from our house. Hope it's a peaceful month for everyone!<br />
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</u>caseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com3tag:blogger.com,1999:blog-4758104575241146462.post-48263550770450874902011-12-13T07:19:00.000-08:002011-12-13T07:53:16.596-08:00Hello...It's been awhile since I posted...Can't believe it's December already. I think I say that about every month. The time just gets away from me and it isn't until I get tons of email asking for an update that I realize I'm pretty far behind on my promised monthly posts...Right now we are in the middle of our christmas shopping and preparations. We are almost done shopping. I like to get that out of the way first as it's the least fun thing about christmas for me. I like to bake, decorate the tree, see the parades and visit with friends. I just LOVE LOVE LOVE though taking the kids out, one by one, to buy things for each other and their family. I just adore how they choose so carefully. And I let them get what they want no matter what it is..because it's from THEM. Then they all go home to wrap them up and it's just adorable. We always start early with christmas activities because with EB you never know when we are going to have an emergency/get sick etc....so you really have to plan ahead. Last night we decorated our tree. Just about every ornament on our tree is a homemade special one..ones the kids made in preschool, etc...so it is VERY hard to let the kids handle them to put them on the tree. My heart is in my throat the whole time and with four ornaments per branch my OCD just kicks into overdrive and I get sweaty!! I always swear I am going to just leave it alone, but every year, after they go to sleep, I cannot stop myself from sneaking in and fixing at least a FEW things. We got our nativity set up too. I try to explain the whole story to the kids every year. Zach gets it and loves to hear the story...Casey never remembers it from year to year..I don't know why. It's hard to keep them from playing with my beautiful set...Becky constantly has baby jesus in her doll bed and Casey throws all the figures into the back of a dumptruck which then speeds around the playroom with my glass treasures. This year I put it up on a shelf instead of under the tree. I'd love to make a stuffed one. I saw a pattern for one. One the kids can play with. Maybe in my spare time next year. <br />
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November was one of those months filled with Casey and EB...If I haven't said it lately, EB just exhausts me mentally and physically. Throw in all the early winter illnesses that you catch in preschool with the EB crap and man it can wear you out. In early November Casey got sick..sicker than I have ever seen him. He started out with cold symptoms and it just progressed to vomiting, laying around with a 104 fever for almost a week, aching, tired..sore throat, runny nose...etc..etc...etc..His skin looked like crap and he had an infection on a neck wound. I took him to the doctor twice...something viral..antibiotic for the unhealing neck wound..and in CASE it may be something bacterial it would cover it..days later as he was seemingly more lethargic and a bit dehydrated to me, I took him to the ER..Now, he has to be REAL sick for me to go anywhere near an ER especially in the beginning of cold and flu season..I mean I really have to be scared for him...but a 104 fever for a week is scary for me. ..and his breathing seemed so labored...In the ER, they did a chest xray, gave him some IV fluids, nebulizers...and said it was viral..I am telling you it was the flu. Ten days before he had gotten his flu shot..so he either was exposed to it before the shot or got a different strain..cause you know you can't get the flu from the shot?? !! ) .Oh year, and in the middle of it all, he scratched his cornea. HORRIBLY this time. The worst one he has ever had and it lasted the longest of them all..four days without opening his eyes..It was just horrible..none of the pain meds helped....all because I passed him a toy, trying to cheer him up and hit his eye..no harder than any other time..I swear it just barely brushed him but I think being so dry and somewhat dehydrated made it scratch easier despite the tubes of eye cream I was applying.. Eventually he was back to his old self and I swore he was not going back to school anymore...it was too dirty a place for him...two days later, I changed my mind. We also noticed that Casey was having trouble swallowing once again. He had a dilatation in May and the surgeon warned us it was such a big one that it may have to be done again...and he was right....so we scheduled surgery around our clinic visit in Cincinnati. John took Casey with his nurse and I stayed with my other two. In the OR, Casey had the same stricture redone (this time is was much smaller), had a bronchoscope and his teeth cleaned and xrays done. The dental exam really bothered his mouth for days afterwards. I think all the manipulating of that small mouth made it very sore. Good news though..no cavities, no infections, and all his adult teeth can be seen on xray and are all normally developed...good news..His bronchoscope was good..some scar tissue on his epiglottis but nothing to worry about..There is actually LESS scar tissue than there was years ago....We are going to put together, along with his surgeons, a two year plan to remove the trach. ..like the criteria we would all be comfortable with in order to see it gone. I am going along with it RELUCTANTLY right now. We are all treading into unknown territory here so it's a guessing game as to wat will happen in the future. We are hoping that by first grade it will be removed. I would love to see it go, but if an episode of blistering happens again that he cannot handle, he could die....and he's MY kid. I was told when he born and even through the first year that his stridoring was not airway related but rather tissue from his esophagus flapping over into his trachea....So how do we know it won't happen again so horribly that it will occlude his airway one night. We don't and neither does anyone else, but it hasn't happened to anyone else.. I am a very firm believer that all EB kids should have an ENT involved in their care and if they stridor that they be looked at. The disease affects the epiglottis in more kids than I think we realize. Enough said on that. John said clinic visit went very well. We discussed different options for pain...removing one med bringing in another...changing a few doses....Everyone agreed that he is doing super fantastic... He grew four inches last year and is 41 pounds now...so for Casey getting rid of the pediasure and switching to blended food was magic to his all around well being. While in the hospital he had his first iron transfusion. It's been borderline for awhile...iron is so important. It is a part of all cells....it carries oxygen from our lungs to our bodies and helps our muscles store and use oxygen. It is a part of lots of enzymes and used in most cell functions..We've been battling poor iron levels for along time. I thought eating more things with iron from a natural source may help absorption (he has a gtube so the options are unlimited) ..but it didn't ..They just either don't absorb it with EB..or use too much of it to keep up with it's supply...Casey has never had a draining wound so he doesn't lose that significant an amount there. I just think due to EB, his body is just using it up at greater volumes than he can keep up with. We got to see the hand surgeon this time and we just loved him. Casey has perfect EB hands.. they have full function and no webbing. One of his web spaces is creeping up a bit so we have decided to wrap between his web spaces at night. Just to give it some pressure ..I've learned that over time they <strong>will </strong>creep ...How long it takes or how much you can prevent is what I wonder. Casey is one of those kids who gets blistered worse when you wrap his fingers. and he just pulls it off...so just wrapping the web spaces, especially just at night for starts is a great way to protect them and not have him pull them off..then we can work up to all day as he gets used to it... His eyes were dilated while there too and his eyesight is good..he has some dry spots on one eye but no sign of infection or trouble. This is baffling as the morning we took him in, he had green drainage so we assumed it was infected..they said no...So, we are off all the antibiotic drops, etc...she thinks it's some old ointment,creams, mucous,etc..not infections...We also got a numbing drop for when he scratches his eye. My doctor here said no numbing drops as it delays healing. He says if the body doesn't feel pain it doesn't react to heal it and the scratch will linger longer and he will open his eye not realizing it hurts and delay healing....I'm baffled as to which is right. I know as a mother,I'm leaning toward what will take that awful pain away...but my brain says my guy is right here about the healing...So, I'm just waiting for his written report to come in the mail. I love going to Cincinnati Children's for surgery. The whole process is so organized, they are all so educated, and care so much about the kids.. His surgeons are superb...and our anesthesiologist was THE BEST this time..I hope we get him again. He is top notch...<br />
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I have to register Casey for kindergarten in a few weeks.. It's hard to believe how far this child has come since birth. I have learned so much from him. I really hope that we will have as great an experience in elementary school as we have had in preschool.<br />
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Zach is doing well. He is acing school as usual....I get it from every teacher..."his maturity has not caught up to his intellegence...Newsflash for them all..I don't think it EVER will.. He auditioned for an honors band and was accepted. We are very proud of him. We have been looking for ways to foster his love of music outside of school. All band programs were cut from the school budget last year. It's such a shame. Our school makes such a big fuss over the sports programs but places little importance on the arts and musics. <br />
Becky is growing so fast. She is so independent and common sense smart it scares me. She is so adorable .<br />
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</div>So, that's about it from our house. Happy Holiday to everyone.. Take a few moments this holiday season to slow down and realize all the blessings that surround you. Be thankful for you family, friends and most of all for your health. Kiss your children and tell them you love them every day. They are our greatest gifts. Hope it's a peaceful time for everyone...I'll leave you with a few new pictures.........<br />
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</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9hPz-SYlfTBntOrwX22spOFljCTPvzmKOGtRbTLFfTV8yGeSO3XIe4maUpGhyKAHOFwluHKS1n6wEPaLrIp5cZNz0JD4uANRUgF5LteIt4RCY2dsl0afp1wcgyO84FnFYOe7vRS5xuFKm/s1600/IMG_4170.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213px" oda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9hPz-SYlfTBntOrwX22spOFljCTPvzmKOGtRbTLFfTV8yGeSO3XIe4maUpGhyKAHOFwluHKS1n6wEPaLrIp5cZNz0JD4uANRUgF5LteIt4RCY2dsl0afp1wcgyO84FnFYOe7vRS5xuFKm/s320/IMG_4170.JPG" width="320px" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6DFhcTB_opjaWAB21CGejbUVN9Mm-mc089rK4PoIFrcc63lIv9ByYN-7TXsyMJ8zho7zElZzyZMFW2JeMB1DVglI4QT_JOsyrRUyCC2O7wOnpRW_MrA9NfZxGu-LaaZqYKnJNm9yRXbCb/s1600/IMG_4378.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" oda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6DFhcTB_opjaWAB21CGejbUVN9Mm-mc089rK4PoIFrcc63lIv9ByYN-7TXsyMJ8zho7zElZzyZMFW2JeMB1DVglI4QT_JOsyrRUyCC2O7wOnpRW_MrA9NfZxGu-LaaZqYKnJNm9yRXbCb/s320/IMG_4378.JPG" width="213px" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNVuXziVoiqb-0HE1xQmdgclKRZEKEOIrl9OMVUDABVSJYy28dNKBn_2hV6iQ_FBJGczl0hcUkT0LiigA6pYqbkVtsTSklyhU0hmiMKqWrrSTy8Gg5E0S0tBsRrzoBoOu-acPgYD4QCzAz/s1600/IMG_4410.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" oda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNVuXziVoiqb-0HE1xQmdgclKRZEKEOIrl9OMVUDABVSJYy28dNKBn_2hV6iQ_FBJGczl0hcUkT0LiigA6pYqbkVtsTSklyhU0hmiMKqWrrSTy8Gg5E0S0tBsRrzoBoOu-acPgYD4QCzAz/s320/IMG_4410.JPG" width="213px" /></a></div>caseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com0tag:blogger.com,1999:blog-4758104575241146462.post-33767316333350457322011-08-11T20:34:00.000-07:002011-08-11T20:34:20.620-07:00Is it August already?Hello everyone...I can't believe it's August already. School does not start for another month, but I am excitedly getting ready for back to school. What is that staples commercial??? You know the one where the dad dances around staples pushing a cart full of school supplies while the kids walk behind moping. Well, that's us this year. I have never wished my boys back to school as much as I have this summer. I know it sounds awful but I'm growing tired of entertaining them and breaking up arguements over who put the tv on first or who had the chair first...wow...it's been an exhausting summer. I have to remember that deep down inside they love each other. And they are sooo cute ..They love each other ...are annoyed by each other, wish each other away, can't wait for each other to come home..My older son reads to casey a special story every night before bed and every morning they cuddle on the couch ..Everything inbetween morning and bed time though is chaos..I suppose it's normal sibling rivalry...and anything "normal" casey does..even if it's fresh makes me smile...I remember doing those same things with my sister and now we are the best of friends...so I guess there is hope.<br />
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Becky will be two in two weeks. Where does the time go? She is just so sweet. She loves to take care of Casey. She hugs him and puts bandages on him. She is just too cute. They are the best of buddies. On the other hand she is so strong willed that she is a great challenge to parent. The boys were easily distracted ..If they wanted a piece of candy and I didnt' want them to have it, I could distract them..like "hey look at that worm over there" and they'd run..forgetting all about the candy. My daughter will follow behind me for an hour or so saying "candy"...<strong><em>relentlessl</em></strong>y . She is speaking in two and three word phrases now so we know what she wants most of the time now. I was worried about a speech delay, but she's really caught up and even surpassed what she should be saying for her age. She can put on her own shoes and socks, brush her hair and teeth by herself, take off her diaper, get a new one, put on pants and shirts (with assistance). She is way too capable.<br />
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Zach is ready to go back to school. He loves school and the routine of it all. He's a bit discouraged that the elementary music programs have been cut from our district. Seems music is the first to go. It kept him interested in school and out of trouble. I hope he can find something else he will enjoy this year. He's a really great boy. I pray every day he stays that way.<br />
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Casey has been doing good. We are looking forward to the fall and some cooler weather. We're not able to do much outside during this hot weather ..fifteen minutes or so and he's all red. We spend alot of days in the little pool outside or in the sprinkler. He loves water. On hot days in school he runs errands around the school or stays in with his nurse and a friend he can pick. His school is sooooo good to him. I am going to miss them all next year. This september he will attend the same preschool but instead of the special education program he was in this year (at three years old) he is going to be mainstreamed into a regular universal preschool program in our school district. He proved this year that he can keep up with the others socially and physically. He is the most loved kid in his class for the teachers and the other kids. He really brings humor to that class. Like I've always approached life with Casey...assume he can do it until proven otherwise and work backwards then. He has exceeded all my expectations. He runs and jumps, rides his bike, climbs the swingset..and if he gets hurt, we just patch him up and send him back out. Nothing stops him from what he wants to do. He is more cautious than most kids his age in his approach to things but he has to be. This year (at four years old) he is finally becoming aware that there are differences between him and other kids. Last year a little boy asked him what is that on your neck? (referring to the trach) and he said ..What??? theres nothing on my neck silly!! ...this year, only one year later, I get..why do I have EB but Becky and Zachary don't? Well, this was my big parenting moment...I had my chance to say something profound and full of meaning...Instead I said....."cause YOU got screwed". ...There goes mother of the year again this year....that's all I could muster up. Pathetic, huh? But in many ways, true. :) ..He just started laughing and singing.."I got screwed" and the moment was over. Next time he asks, I'm going to be better prepared. I promise. ....Anyway, we are still battling eye infections off and on since the last corneal scratch. I have tried every drop, cream, itch, dry eye combo out there ...We've washed hands fifty times a day...cleaned up arm bandages that may rub against his eye many times a day..I am off for a second opinion later this month. Our highlight of the month was finding sandals that would fit Casey. Yes, his feet are wrapped ..but he really LOVES having sandals like his brother..and so far we have had no blisters from them....I know it's a little bit geeky to wear socks with sandals..but I'm not about to unwrap those feet..I'm most protective of his feet. Our lowpoint of the month was when we unwrapped his hands for bedtime.. If we don't unwrap them before bed we come in to find he has done it himself anyway..he hates them wrapped...so we compromise and unwrap them before bed. This particular evening he decided to stand on his bedrail and jump off like batman. Of course the rail could not hold his weight and down he went on the palm of one hand. All the skin peeled from the palm and was clumped on the side of his hand in a ball. He screamed like he hasn't done in ages...After I wrapped him all up, my husband says to him..."casey this is going to suck in a few days when it starts to heal" (casey hates itchy and it gets itchy and drives him mad as these types of wounds heal)..So casey says to him.. "what do you mean in a few days..it sucks RIGHT NOW"...and we all started laughing and he forgot all about the horrible hand wound. I wanted to punish him for saying such an awful word, but really....It did suck. .... The hand is healed up now and I don't think he'll try that one again. This month we are scheduled for a dexascan (bone density) and an echocardiogram as well as a dental visit. Casey's well visit went great. He gained another two pounds. He is just ounces shy of 40 pounds..and he is 39 inches..up an inch from last time.<br />
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I got alot of email last month asking me my feelings on the bone marrow transplants being done and if I have considered it for Casey. Honestly speaking, we have looked into the two different protocols being explored extensively..we had Becky and Zachary tested and they are <strong>not </strong>matches for Casey unfortunately. I may have been a bit more apt to do it if he had a SIBLING match. The age group Casey falls within has had the most complications. I follow each child closely and have spoken and met with the doctors doing both protocols. The protocol being explored in our closest hospital accepted Casey as a candidate, we set a tentative date and I backed out. He has on reserve two perfect matches from the public donor bank with a high cell count (more than what is needed for the study) but that will change as he grows and gains weight. The samples will become smaller in volume compared to his weight... They also found four very close matches they were happy with. I am just waiting for some sort of sign that says it's the right thing to do and I haven't gotten it yet. My heart still says it's not the right time..and I always follow my heart...Maybe it's a bit of my selfishness..not wanting to take a chance at losing him right now....I don't know...As he gets a bit older and they fine tune the chemo regimen, I am going to re explore. Never since Casey was born has there been so much hope for a cure. I hope funding continues to go to the right places. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9_HSRYPnzU4EVF_eOEwoDhnjwBpJZnxT2BaNDO94VIKJ_W7LGxM-Cqw6_yK-AD3BGg3OQiSaxstQmNeWR9YVtmvcUCBTFQzuahJoI8yLdrO_9VXi9zIzgL-M7iPIznw0f1NlHgTJ8tI4t/s1600/IMG_3043.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" naa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9_HSRYPnzU4EVF_eOEwoDhnjwBpJZnxT2BaNDO94VIKJ_W7LGxM-Cqw6_yK-AD3BGg3OQiSaxstQmNeWR9YVtmvcUCBTFQzuahJoI8yLdrO_9VXi9zIzgL-M7iPIznw0f1NlHgTJ8tI4t/s320/IMG_3043.JPG" width="213px" /></a></div>Well, it's getting late and I have to get to sleep. Hope it's a peaceful end to summer for everyone .. caseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com0tag:blogger.com,1999:blog-4758104575241146462.post-35359413997248140552011-06-15T13:11:00.000-07:002011-06-15T13:22:44.786-07:00 Wow..June is half way over already......It's been a busy month. (I think I write that every month lately!!) June is end of school month here. The 24th is the boys last day. We've had concerts, moving up days, talent shows, plays, parties, field days, field trips...The kids are having a ball but man is mommy exhausted from it all...and it's all been crammed into two weeks. They only have two weeks of school left though. One and a half full weeks and the last two days are half days. ...why does the school throw in two half days at the end....Reallly, can't us parents enjoy just two more whole days of peace before we have them home the ENTIRE summer?? :) <br />
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I learned a few EB lessons this month. We've had a month of eye troubles..abrasions, infections..We've gone through four different eye drops for allergies, antibiotics..lubrication...And we still had an infectionn, dry eyes, itchy eyes..and injuries from trying to get them all in playing with his lids... He had alot of green discharge for more than 4 weeks ...even on the antibiotic drop. I couldn't figure it out and the eye doctor just kept prescribing them. One day I decided to culture the discharge (it was a big green glob). Turns out he has two different staphs growing in that eye..each with different resistances. The eye drop he was on was one that came from a family of antibiotics one staph is resistant to. It only cleared up the one staph and the second one was still in there. We then had to add a second drop, erethyromycin (it was about the only antibiotic that it was not resistant to) and boom....eye cleared up. So, lesson learned..you can culture eye discharge...and there are different drops that contain different antibiotics..if your eye infection does not clear up in a few days with those broad spectrum antibiotics...try another family of antibiotics ..sometimes there is more than one germ in there and there are apparently lots of different types of staphs with different resitancies. Wish the lightbulb in my head would have went off a few weeks earlier. Anyway, the scratch was gone two days and he was feeling much better. The eye still had a few dry patches on it even though we use lubricating ointment and drops everyday several times. Turns out that you should use a perservative free eye drop (the ones in the individual vials) because the continual use of perservatives daily in the bottled ones over time irritate the eye and cause you to rub it..in return causing it to dry out rather than lubricate. That's why he was developing dry patches even though we really lubricate them. The dry patches make it easier to scratch the eye. Learned lots about the eye and EB this month. Really, is there any complication Casey will be spared...even the rare never seen before in dystrophic seem to find him.<br />
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He also went to his first "friend" birthday party this month. He was so darned cute and had so much fun. It was outdoors but not a terribly hot day..He swung at the pinata, ate some cake and played on the swingset.. He even wore the superhero cape. (it was a superman/batman type party). He loves to pretend..My older son was more of a realist...He'd never wear the cape..he'd say.."I'm not superman, I'm a boy." Casey threw that cape on, put his arms up and spent hours chasing his friends pretending to be superheros. It was a day of well, "Normal kid stuff for casey" and no irreversable damage had been done..not even a blister. Wonder why I worried about all the horrible things that could happen all week leading up to it? He had such a good time. The kids from school are awesome with him. He couldn't be luckier on that end. You just can't NOT like Casey. He had his end of year ice cream party this week. They all made flag shirts. They sponge painted some stars and for the stripes they used their handprints. I just love his school and his teachers..Now, I was a bit nervous about painting his hand and all and getting it all off, but lesson number two this month (as long as there are no major open wounds) ..If you want to paint a child with EB's hands, first coat them with vasoline, rub it in, and then paint the hands..we made handprints on the shirt and simply wiped off ALL the paint easily. <br />
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That's about it from our house...Remember to slow down and count your blessings. Once you sit down and think about it, you'll see that you have so many more than you ever realized.....<br />
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I'll leave with some pictures of our three little angels....<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6-d1VP6lB6Hlv8rV9Td6J2SIyvWM5nLyWO_y4kcZwELVuhUuxBXgZx8itsLODVSw8DDzV1HG0mHhweVfKCO52pmDGZBmin1zlCMtsQnw3tDZrdtVI5i6Muu5h3sRPoobJRUHzVJnLzduI/s1600/IMG_2711.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6-d1VP6lB6Hlv8rV9Td6J2SIyvWM5nLyWO_y4kcZwELVuhUuxBXgZx8itsLODVSw8DDzV1HG0mHhweVfKCO52pmDGZBmin1zlCMtsQnw3tDZrdtVI5i6Muu5h3sRPoobJRUHzVJnLzduI/s320/IMG_2711.JPG" t8="true" width="213px" /></a></div> Casey running in the sprinkler<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_Y2haFTR4N9yB9KEb0g0keOVzVoR8iMr-bIJxoANNSn1FaWxrfG8nDEgZdrJYR5xbS9RacXiVrJu4Z9FG65ynD0SCfcJmcHX9d6W3V-87rfiORqpVEFpCSGY66ZeNlUs4Ddn-zbcbB3l8/s1600/IMG_2787.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_Y2haFTR4N9yB9KEb0g0keOVzVoR8iMr-bIJxoANNSn1FaWxrfG8nDEgZdrJYR5xbS9RacXiVrJu4Z9FG65ynD0SCfcJmcHX9d6W3V-87rfiORqpVEFpCSGY66ZeNlUs4Ddn-zbcbB3l8/s320/IMG_2787.JPG" t8="true" width="320px" /></a></div> Becky 22 months<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1kVJ9Nle4uUOt7auwnJlDmpEI6iFauBzTnmsRO-Mg85OpIId_fV8SISc4Fj7J6Q86i44fZx-lCWzxmKDS3bwQc6iFtFcO2JKn-y3NO3t48zg_5cRd7IcYATD-X3AFk_eoAj4OL2aR6pyr/s1600/IMG_2833.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1kVJ9Nle4uUOt7auwnJlDmpEI6iFauBzTnmsRO-Mg85OpIId_fV8SISc4Fj7J6Q86i44fZx-lCWzxmKDS3bwQc6iFtFcO2JKn-y3NO3t48zg_5cRd7IcYATD-X3AFk_eoAj4OL2aR6pyr/s320/IMG_2833.JPG" t8="true" width="213px" /></a></div> Becky at the aquarium<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifq1Tc15A-OhjmvkXqyd6L2zgDTdx2vU4YitfANchppwcRgOR5-E6B3Jp33dSaGG4c2PeiYm87_eBJfjyuFzfjqnzX50TAYRy51PQqprWQpWJo0CzVglwT_8pu4NWRxus8JZr1fB-eUpd0/s1600/IMG_2889.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifq1Tc15A-OhjmvkXqyd6L2zgDTdx2vU4YitfANchppwcRgOR5-E6B3Jp33dSaGG4c2PeiYm87_eBJfjyuFzfjqnzX50TAYRy51PQqprWQpWJo0CzVglwT_8pu4NWRxus8JZr1fB-eUpd0/s320/IMG_2889.JPG" t8="true" width="213px" /></a></div> Zach 4th grade field day<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9cEj3pqw4NZAk3BU4wmx4DtHQuQbbwNevcb5aJbtdBI-6xsCXVhKjqNOjdsh3LvOQBeT9V-ZFYMss9_R2x1FkPT9Hv9T9Ma3CKWzKZtn-eIgtIyD4QWzheK4XeMDFZQbInN79luGGVCP9/s1600/IMG_2890.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9cEj3pqw4NZAk3BU4wmx4DtHQuQbbwNevcb5aJbtdBI-6xsCXVhKjqNOjdsh3LvOQBeT9V-ZFYMss9_R2x1FkPT9Hv9T9Ma3CKWzKZtn-eIgtIyD4QWzheK4XeMDFZQbInN79luGGVCP9/s320/IMG_2890.JPG" t8="true" width="320px" /></a></div> Casey end of year party at schoolcaseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com0tag:blogger.com,1999:blog-4758104575241146462.post-11950374448945731282011-05-23T06:26:00.000-07:002011-05-23T06:26:36.367-07:00A month of blessings..Hello all...Boy it's been a challenging month here! I barely know fit it all into a post short enough not to bore you! :) Lets get to our surgeries first...:) This month John's mom, John and Casey all had surgery. John had his thyroid surgery. The surgeon was able to remove only half the thyroid and the tumor. Biopsy was negative. He's recovered well. No further surgery or meds needed. (That's our first blessing this month. ) John's mom, who I mentioned was struggling with end stage Congestive heart failure, received her LVAD pump last month. She was discharged only two weeks after surgery and was able to come to the kid's birthday party. Nothing short of a miracle. I have a new admiration for her. She faced her crisis with confidence and enthusiasm and her will to go forward is what saved her life. I pray she continues to improve as each day goes on. She really deserves it. (Blessing number two). The week after John's surgery he flew to cincinnati children's Hospital with Casey for his surgery. While there he had a bronchoscope which showed some swelling and blistering on his epiglottis. (we knew he had an episode of this about two weeks before we went. (it must take a long time for this area to heal) It was nothing significant and the rest of his airway was perfect. (blessing number three). As I told you he was having trouble swallowing the last few months and vomiting every morning. Just the morning . It took me months to realize that he may have a stricture. Casey always had trouble swallowing due to the trach..and he's never really eaten good..so it was hard..it was the vomiting in the morning and crying my "mouth hurts" that finally hit me like a brick. Well, he did have a stricture and it was about 80% closed. They opened it up..he stayed overnight and went to the aquarium in the morning. He was put on steroids after the procedure so for a few days he cried over everything..Like a paper towel in the road he saw out the window of the car that was going to get run over....15 minutes of crying for me to get out and help it??? or the 20 mintues of hysterical crying because I threw my garbage in the kitchen pail instead of the small bathroom one???? I despise Casey on steroids...Anyway, He loved his trip. Crazy cause he was in the hospital for half of it. But he focuses on the positive my little man...He will tell you..Yes, I was in the hospital but I also went to the aquarium. It's hard to be home while he is there but with two other children we don't always get the luxury of getting to go together. And when it comes to hospitals,surgery and doctors his dad just jumps into action. It must be the nurse in him. This is where he is comfortable and where he feels he is needed the most in Casey's life. So, dad ALWAYS goes. I know he is in such good hands there that it makes me relax a bit about not being there. He has two of the best surgeons in the world. And not only are they incredible at what they do but they are true gentlemen as well. (blessing number four!) Casey is slowing eating better and I'm thrilled at that. He gained almost four pounds last year and grew 3 1/2 inches so I know he's doing good. I am just waiting on his blood work result and have to schedule a dexascan and echocardiogram as well as a GI visit and we're done with routine stuff until next year. Throw in Easter, Mother's Day and three birthdays as well in the last 4 weeks and I can officially say I'm exhausted. Not only are we ordering out food every night because I'm too tired to cook by the end of the day, I've found for a small fee most places will deliver it right to your door. I don't even have to leave the house to get it.. How lazy have I become..I could get used to this....<br />
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Zachary turned ten this weekend. It's hard to believe. He's such a good kid. I wouldn't change him for a million bucks! (ok..maybe I'd make him a bit neater and organized but that might just be the OCD in me).<br />
He has two school music concerts coming up. Concert and jazz band. He loves playing in band..Sad thing is next year they are cutting elementary music from the budget. Never sports...always music programs. My taxes will go up almost 400.00 a year and my son can't even play his instrument. and that's if the budget passes. even if it fails, I still pay 270.00 a year more..and no music. Hopefully the state will restore some aide to our district before the school year begins..<br />
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Casey turns four during the week. I blinked my eyes and boom....he was four. He is a great kid. Hands down the coolest four year old I know. He's outgoing, funny, always sees the positive and loves EVERYTHING. He was able to eat his pizza and some cake so I know his throat is feeling better. Four years after he was born so many things are so much easier but so much of it is still so draining. I turned 43 yesterday but I feel so much older and tired. Casey decided he is going to learn to unwrap himself once he turned four so he basically takes all of his bandages off himself before a bath and can give himself his own eye drops..I think the more control he can have over his care the less he'll fuss over the things he has NO control over. Seriously, to ask a three year old to sit still for an hour while we rebandange him is asking alot...thank god for his nintendo DS... :)<br />
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Well, that's about it for us...Hope everyone is enjoying a peaceful week...I'll leave you with some pictures from the week....:)<br />
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incaseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com3tag:blogger.com,1999:blog-4758104575241146462.post-9211907176704789702011-04-05T06:26:00.000-07:002011-04-05T06:26:42.130-07:00Hello..It's just about April and we just had snow flurries. Where is spring??? Things in our house have been busy...Becky is my handful this month. She yet again had another ear infection...after two rounds of antibiotics it's gone but the fluid is still there and may take months to clear up again. We go back in a month. Now that she is 18 months old the ENT hesitates to put tubes in saying she's at the age of outgrowing it all. So again, it's wait and see. Which at this point is what I wanted to hear anyway. I have enough other stuff going on. Her speech evaluation was fine and the words are just pouring out now. So it obviously hasn't affected her speech and her hearing is perfect as well even with some fluid in there. Then I thought maybe it was an allergy to something. I've heard that removing milk from their diet is a longshot but could be worth it. So, I took her to the allergist to see if it could be an allergy to something since she has eczema on her lower legs since she was born.. After 6 panels I found she is allergic to NOTHING. Could she still have a sensitivity to something in milk?? I don't know. I've removed almost all chemicals in lotions, shampoos, toothpaste, and for now it's not affecting her speech, hearing or behavior so I'm letting it lye. I have bigger fish to fry this month. :) Becky is my most active child out of the three. She can climb, scale walls, jump, skip....she focuses most of her energy on gross motor skills. She even got her first cat scan last week. Not even the boys can claim fame to that one. It was our first real nice day and I opened the windows in the playroom. I left the room and she climbed onto the toybox in front of the window, leaned on the screen, and fell out head first down into the basement window well. It's about six feet down from the window. She had a bump on her forehead the size of a golfball and one at the base of her neck. She seemed fine afterwards but daddy took her to the ER just to be safe....and she was fine...I can not take my eyes off of her for a moment and with EB needs of a toddler, I don't know how to accomplish that. She climbs out of her playpen and scales a baby gate like it's nothing. <br />
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Zachary is doing good. He's been chosen to play a solo for the NY State Music Association. Normally fourth graders do not get chosen, but Zach is very proud he is able to participate this year. He works very hard. Report cards came out this month and we went to his teacher conference. He earned a nearly perfect report card once again. He is a pleasure and there are very little surprises at his conferences. Casey on the other hand is a whole "nother story .... :)<br />
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Casey turns out is my comedian. Don't get me wrong I am overjoyed by that fact. When he was younger I worried how he'd be a confident person having so many differences from other kids his age. I don't know how it happened but everyone LOVES Casey. All the kids in class follow and want to play with him, therapists and teachers find him funny and he just loves EVERYTHING. I never know what to expect at his conferences. There's always an "Oh, Casey " at some point in the conversation. This time it was....Casey was out for two weeks .."did you miss me Casey (his teacher asked)....Nope, not even a little..I did miss the sand table tough..Can I go play?" Or when he passed gas in therapy the therapist asked .."Casey what do you say?" He says "oh sorry..and go on to say "I cut the cheese guys"..No casey, how about "excuse me"..he then says.."why are you saying excuse me ..You didn't cut the cheese?" UGH..I think I would be appaled if Zach's teacher said that at that age..Somehow, either you mellow with the second one or I am just Happy when he acts ":normal" so I give him a free pass ..I love that he is such a cool kid. He can now go down the big slide on his own and scale the rock wall alone. He knows most of his alphabet and can spell his name..and boy can he play super mario brothers on nintendo..He's incredible..This could be his special talent :) On a more serious note, Casey has been having increasing trouble swallowing his food. He's at the point now he can only swallow liquids without gagging. Oh yeah, and cheeze it crackers???? ...I spoke with his surgeons at Cincinnati Children's Hospital and we decided Casey needed to go down and have the problem looked at. He's never really been a great eater and since the trach he does frequently cough and gag, but this is different..he looks scared and he says "I can't swallow it "...This is an unfortunate reality in EB. Maybe he is developing a stricture, maybe he still has some swelling/misoperation of his epiglottis from the last incident we ad..who knows, but why guess? Yesterday he yawned and it triggered a vomit. No emergency, he has the gtube.. So, we are going to be in Cincinnat from the 8th of May till the11th of May. His surgeon will check his esophagus and the ENT will do the overdue bronchoscope at the same time. These two surgeons ROCK. We just love them. I wouldn't place my son in the hands of anyone else. <br />
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Two weeks before we leave for Cincinnati, John is going to have surgery. A few weeks ago the endocrinologist found a tumor on his thyroid. Biopsy of it showed a large tumor with some atypical cells but was inconclusive by needle biopsy due to the size of it . So the only way to biopsy it is to remove it and the half of the thyroid as well. They will then biopsy it in the OR and see if it contains any sign of cancers . If it does they will go on and remove the whole thyroid. So, on the 25th of the month,<em> </em>He is off to surgery at the same hospital he works in. <br />
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So, that's about it for now. Its a busy month coming up for us. Hope it's a peaceful one for you...beth<br />
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I love the people who post anonymously. If you have questions, please feel free to ask them..negative or positive. I know when I open my story to the public there will be some who don't agree or who don't even Like the approach I take to my life...and frankly, you have your right. Even the negative comments have a place. To anonymous who asked why we would bring another child into this world to suffer after we lost one already..I have this to say...Thank you so much for taking enough of an interest in our family's story to comment...but you misunderstood our story. I had my older son Zachary first. He is ten and unaffected by EB. My second child was our baby Sarah. She died shortly <strong>before</strong> birth in utero from complications<strong><u> totally unrelated to EB</u></strong>. We had never heard the word EB until my son Casey was born, so I did not bring a child into this world knowing he would have EB and suffer. It was a tremendous surprise to us. Without going into my personal life too much, we took every precaution available to us to assure that we would not have another child AFFECTED by EB and as a result, Becky did not suffer from EB. So, with that being said, the answer to your question "anonymous" is just that . We had no idea that Casey would have EB..Our daughter's death had nothing to do with EB. Next time become part of our circle of friends and leave your name so I do not have to address you publicly. It was not hard to read your comment at all so no apologies are needed. I'm sorry I've intimidated you into posting anonymously with your thoughts.....I hope I've cleared things up....caseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com1tag:blogger.com,1999:blog-4758104575241146462.post-49869222341223384782011-03-13T19:31:00.000-07:002011-03-13T20:04:02.175-07:00Only a few days from Spring...Hello all...Wow..I am so glad Winter will soon be behind us. With spring only a few days away, I have the urge to throw all the boots, gloves and winter socks into a big garage sale bin and take out the shorts...Of course we always have one more big spring snow here it seems, so I guess I'll have to leave them out a few more weeks..I'm tired of looking at it all in the entrance way.. It has been so nice to be able to get Casey and the kids outside after what seemed like years of being indoors. The kids LOVE to be outdoors. Casey runs around and climbs up and down his swingset, rides his hot wheels...When you look at him outdoors it's like he doesn't have a problem in the world. On his swing he can't swing high enough, and he can't go fast enough on the big wheels...he's more cautious than other kids his age, but hell, he HAS to be. I never thought when he was born that he would be so happy, so funny and so...well, ....Normal??? The child amazes me. He's been out of school for the last week due to a stomach virus and all the EB related complications that come along with it for my son. It was a winter of strep, stomach viruses, eye abrasions, colds, more strep, more stomach viruses...and on and on...some of it from school no doubt and some of it from people who still can't understand why they shouldn't bring their kids around Casey if they are sick. I still get "it's only a rash"...or "it's just a cold"...Maybe for their child it is...but for a child who's skin comes off his throat when he coughs, a cold is not "just a cold"...and for a child who's skin peels off when he itches...A rash is not "just a rash". It drives me nuts..let's just leave it at that. I am hoping that Casey will sail through spring feeling much better. As if EB is not enough, does he have to get colds and strep throat too??? UGH..<br />
This month we are due for bloodwork and his yearly Echocardiogram. We are trying to get to cincinnati children's hospital for a bronchoscope and hopefully a look at his esophagus while we are there. I find he's been having trouble swallowing lately and I feel like something may be brewing...or it could just be the endless strep he's had all winter...Our ENT here says he may need his tonsils out if the strep continues or if he is colonized ..I will leave that one for his super fantastic surgeons in cincinnati to comment on. I was supposed to reculture him a week off antibiotics but I have not done so....I am subconsciously avoiding it because I dont' want the possibility of having to face one more problem..I just want to enjoy the month of march in my "happy place". Becky has a double ear infection once again. She can't sleep at night..she cries on and off all night almost every night..If they are not infected..they are full of fluid..and they can say fluid doesn't mean an ear infection..but for Becky it's a GUARANTEE that an infection will follow... I am losing patience with it..I just keep thinking something is causing it...and what is it??? Her ENT is discussing tubes again...but before surgery and/or chronic antihistamines I am going to look into the possibility of a milk/dairy allergy with her..She has chronic ear infections and so many eczema patches on her legs...all signs her ENT agrees point to a mik/dairy allergy. Tomorrow we are off for a recheck of her ears and then to the allergist. She is really talking up a storm lately..she's incredibly smart..unlike the boys she can multitask and use common sense to solve problems...I guess it's a girl thing...Zachary is still playing in band..got a perfect mid semester report ..At almost 10 he could be causing me such trouble already, but he is truly the sweetest kid I know.<br />
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As we were outside raking up the yard today we came up to our baby Sarah's tree and were once again reminded that this April she would be 5..starting kindergarten....I HATE the whole month of April...I turn the calendar to April and my heart just sinks and stays there until May...I'm lost the whole month. I am hoping one day ..one year...we can learn to celebrate her but for now..it just brings me too much pain to think about it at all. One thing that haunts me as I think about it is that we have no "memories"..nothing that you can look back on and talk about...The boys ask me to tell them about her and I really have very little to talk about...No stories to tell them...and in other ways that may make the whole thing easier..memories can HURT too. I really don't know which one is better. <br />
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John has been faced with some health issues. I have to respect his privacy and not "blab about it to everyone I know"...He's been depressed and removed from us lately. So, when you say your prayers tonight please include one for him for his health and one for the rest of us to find a way to cope with his roller coaster of emotions.<br />
<br />
So, that's about it from our house. I hope spring is a peaceful one for everyone...<br />
Hugs<br />
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Our New Year has not started out as I had hoped. It has been one sickness after another in our house. And for the first time in YEARS I have been sick...REALLY sick... It's not a pretty household when the one who holds it all together goes down! Dads try to keep it up, but they just don't have the ability to multitask and organize what has to be done like moms. This winter I made sure that each person in my family got their flu shot on schedule...I was serious about everyone being protected esp. Casey...Everyone that is, except ME.. Last week I woke up suddenly with a 102 fever and stayed that way for six days...sick as a dog...sore throat, upset stomach, chills, fever, stuffed head, body aches, exhaustion...Yep..you guessed it..I ended up with the flu. Even today as I type this I am only beginning to feel better and it's been more than three WEEKS. My husband had to stay home one day last week to help out and my family had to stop by and pitch in a hand with Casey..His care is extensive and you can't miss a step..not even when you are sick.. Anyone who knows me knows I can handle an atomic bomb going off in my house without asking for help. I've never been good at asking for help...Luckily my family just knows when I need it and offers it up without me having to ever ask. Casey has been sick one thing after another for almost two and a half weeks. So to take care of him sick while I'm sick and still tend to his EB needs just kicked my butt.. First he scratched his cornea..that was two days in the dark crying and hanging on me..two visits to the Eye doctor...then on the third day, he rubbed it and put a second scratch in it...so, two more days of crying, lying in the dark, vomiting from getting so upset and two more visits to the eye doctor when it got infected, not to mention five sleepless nights crying in pain. Two days later we got the all healed sign from the eye doctor..only for him to wake up with a 103 fever and vomiting. and he stayed that way for two days..laundry piled up as high as the tables in my house and we ran out of every dish I own ...all the while, remember, mom has the flu.....and see EB complicates vomiting. The typical toddler vomits, and it's over in a day or so..it's awful when it happens...the endless laundry, fevers, medications, sleepless nights, apple juice sips... :)<br />
But when an EB kid, or at least let me say MY EB kid vomits, he coughs up pieces of his throat, bleeds from it ...swells the upper airway, can't drink or he'll aspirate due to the swelling for days ..goes on nebulizer medications round the clock for a week or two, steroids, stridors and has difficulty breathing easily...ends up with the cap on the trach being removed...coughing ...producing pounds of mucous which he vomits up several times a day causing him to scream in pain about his throat for a week, swell it more, bleed more..require us to change vomit filled bandages several times a day.....and the cycle continues and continues...He's still struggling today..He hasn't been in school in two and a half weeks. I missed two weeks of work. And now he's on to an upper respiratory infection..with a runny nose and a cough...and every time he coughs, he screams his throat hurts..I can only imagine how much pain he must be in. Every mom will tell you there is nothing worse than seeing your child in pain...well, I've been witness to my child in pain off and on for three and a half years while all I can do is helplessly watch it..Then his G-tube was accidently pulled out for the first time...and he developed a rotten pseudomonus infection on a wound on his neck...I think it's from drooling on it ..His throat is so sore and swollen that he can't swallow his own spit. I think that's what infected the wound. Well, a few days on oral antibiotics and the wound and the infection is gone. Than was two more visits to the doctor last week...and did I mention I have the flu? :) This last two weeks I have felt the worst and most helpless about EB. I think your attitude towards things and how you handle them is a refection upon how you feel physically yourself. When you feel bad, you see the bad in everything. Everything is negative. Most people around me now know not to ask much of me in the lines of help these days.. I can barely take care of myself. EB is just overwhelming me. I thought almost four years later, it would be easier but it's just draining and relentless. It takes a toll on my whole family. John and I have no time for each other. I think we've been out together alone five times in the last year. I am lucky to have a few very dear friends and family who understand that I'm not a very good friend...I don't return phone calls, usually cancel plans and are rarely there when <strong>they</strong> need me..yet these few totally GET IT...and I can't thank god enough for them ....The ones that can't understand or have been self absorbed in their own lives have parted paths and that's just sad. It's sad for me and sad for Casey. Four years after Casey's birth and I still have friends and family who don't GET IT.. People can be understanding and sympathetic for a while..even a few years...but after a while they just don't understand the need for it..Eb doesn't GO AWAY..THINGS DON'T GET BETTER OVER THE YEARS... We still need help and always will.. I hate that fact. I have yet to learn how to manage my time and still tend to all his needs, not forgetting I have to throw in the needs of my other two children..one of which is ONE....I need some serious time managment training..Or maybe EB and it's overwhelming unpredictability just doesn't allow for a "schedule" or a routine.??<br />
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In the midst of the chaos this month we have a family member that really needs everyone's prayers. She is a proud and modest person who doesn't like us to solicit sympathy for her over the internet...:) I've been warned against it. :) So, let's just say family member "A" can use your thoughts and prayers as she is going through a very difficult time health wise.<br />
<br />
Well, enough negativity for one post.. Casey is now on the mend and Becky and Zachary are doing great. I don't always talk much about them. It's almost always about Casey.. :) Well, Zachary is a great kid..Have I mentioned that before?? :) He is an angel for an almost 10 year old. With the exception of being a bit of a scootch around the house he does nothing wrong. He is social, happy and loves school. He now joined stage band. A separate band from concert band that meets after school for the "more advanced" band members. So in addition to two early morning rehearsals, he has one after school as well as two lessons a week..and as long as he enjoys it we will continue to encourage it..to me it's a bit too much band, but it's his passion right now. He received a perfect mid semester report again.... He just loves school. In five years of school the child has only missed 7 days...Unbelievable..and he has NEVER been late ...Not ever! Nor has he gotten in trouble even once in five years. I count my blessings when it comes to my son. He's such a special boy. I love to do special things for him because he sacrifices without complaint for his brother every single day..whether it's missing a play date or event to help out or just giving up his time with mom so I can help Casey. He's just the best kid ever...<br />
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Becky is almost 18 months and has finally started to spark some words...and her voice is sooooooo cute...Unfortunately I think we have started the terrible twos early with her...She can throw a wicked temper tantrum..head banging and all..Unlike the boys, she is dramatic about it and not easily distracted out of it. ...On the other hand whenever Casey vomits she runs to him with a towel and holds it by his mouth and if he cries she stands next to him and watches until he's better and then lays her head on his shoulder and kisses him and she doesn't leave his side until he's happy again. They have a very special bond.. All three kids have been taught to begin and end the day with a hug and kiss to each other. Don't get me wrong I am referee all day long with the three of them...I get up and put on my black striped shirt and grab my whistle every morning..but deep down inside I have succeeded in raising them to be there for each other no matter what..the squabbling will pass as they grow older and they will know they have friends in each other forever..Family is the most important thing in this world to me and it will be to them too..because that is how they are being raised..<br />
Hope you all have a happy February ....it's like 6 weeks or so until spring....I havent' seen the ground here since christmas with all this snow. Even the kids who couldn't wait for snow, can't wait for it to melt.....I can't wait to break out the bubbles and the swimming pool!! Spring can't come fast enough...I'll leave you with some pictures of our winter....<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizNTmK8GUJPF5VLwOBq0VBtoCdZ9-esdnlKPwxMqSOuCDtRBLBInVYwIB_tXsy03Y3GOjBwTZvQGWA9Qde3tYyjlwPe962Y7zKKY3W6rNaRZAx_FaX4qhCozP7Ri6WYZY7tf3cuRlegiUK/s1600/IMG_1697.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizNTmK8GUJPF5VLwOBq0VBtoCdZ9-esdnlKPwxMqSOuCDtRBLBInVYwIB_tXsy03Y3GOjBwTZvQGWA9Qde3tYyjlwPe962Y7zKKY3W6rNaRZAx_FaX4qhCozP7Ri6WYZY7tf3cuRlegiUK/s320/IMG_1697.JPG" width="213" /></a></div>Hugs to everyone....caseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com3tag:blogger.com,1999:blog-4758104575241146462.post-21979605611457503622010-12-11T20:16:00.001-08:002010-12-11T20:16:49.087-08:00zach's winter concert<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1hH-lSb2XdlWArALjE7Ho3JXDonwwqPWz_-BYrWg0K5eXFgAGQchPd_byTEmsxUXUFEPiJwuZ8viIuhggdMM0ujv-UYAIhOIFc9Ndfj_rI2iWg8GaWBifsIxzANoMI39i4yWfUjXle-cL/s1600/IMG_1168.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1hH-lSb2XdlWArALjE7Ho3JXDonwwqPWz_-BYrWg0K5eXFgAGQchPd_byTEmsxUXUFEPiJwuZ8viIuhggdMM0ujv-UYAIhOIFc9Ndfj_rI2iWg8GaWBifsIxzANoMI39i4yWfUjXle-cL/s320/IMG_1168.JPG" width="212" /></a></div><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqvFfIIqPktckSQcuQy_-n6BxIphlZ-hPQYaMdQkgY-5G7kJq_0lq3cRNjdDeXbhVKil4XoC_GHl5Ld1tpnujAR2nOqDszXk2AaN87iRO_x2ITBpmCtod2zYYV2UYObMsvgVikb0CJ79S0/s1600/IMG_1197.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqvFfIIqPktckSQcuQy_-n6BxIphlZ-hPQYaMdQkgY-5G7kJq_0lq3cRNjdDeXbhVKil4XoC_GHl5Ld1tpnujAR2nOqDszXk2AaN87iRO_x2ITBpmCtod2zYYV2UYObMsvgVikb0CJ79S0/s320/IMG_1197.JPG" width="320" /></a></div>caseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com1tag:blogger.com,1999:blog-4758104575241146462.post-55988206628739690342010-12-11T20:14:00.000-08:002010-12-11T20:23:39.269-08:00Happy December<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis51zJePZbreit8KJHLOOmQ0BrVTDawDKhHov90tO36VJkf7vIowTGn2r3zKywWpcjo-pG9_cYiXJxR6yJYbgs0J-TfxiHB4ExVQMJs0xBG2RY-Qaq5vX1_j_il4FgFZW4esn03Iao1jcO/s1600/IMG_1238.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis51zJePZbreit8KJHLOOmQ0BrVTDawDKhHov90tO36VJkf7vIowTGn2r3zKywWpcjo-pG9_cYiXJxR6yJYbgs0J-TfxiHB4ExVQMJs0xBG2RY-Qaq5vX1_j_il4FgFZW4esn03Iao1jcO/s320/IMG_1238.JPG" width="229" /></a></div><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9RLPkKsGyPlrmlCpXy-FZGujyKRqFHg1LSXh0vl_yM3xxKzUapqZUi1hP3UZaE_qJqBW0LAglncPqbqTY33qvkuGif_KHZRUpX0KETiW-QNzy8O51KEatslEX9PX5QU7QstBgs2GQIuE0/s1600/IMG_1381.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9RLPkKsGyPlrmlCpXy-FZGujyKRqFHg1LSXh0vl_yM3xxKzUapqZUi1hP3UZaE_qJqBW0LAglncPqbqTY33qvkuGif_KHZRUpX0KETiW-QNzy8O51KEatslEX9PX5QU7QstBgs2GQIuE0/s320/IMG_1381.JPG" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_F1VDhKygRa9wj7mBT7KCz9Gil_2knVUpLP5zwoCGzybGc9q1Arqrw6Pn7xC5ydTlvkFEOcd1-pW8Sy5p2nJCK5EZJgnU7ZigodkBGUFPWhC-9OVcrS6wxVSBDxO571S7cLf7vebK1DbC/s1600/IMG_0131.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_F1VDhKygRa9wj7mBT7KCz9Gil_2knVUpLP5zwoCGzybGc9q1Arqrw6Pn7xC5ydTlvkFEOcd1-pW8Sy5p2nJCK5EZJgnU7ZigodkBGUFPWhC-9OVcrS6wxVSBDxO571S7cLf7vebK1DbC/s320/IMG_0131.jpg" width="213" /></a></div>Happy December....It's been an exhausting month here..On the brighter side, Casey grew two inches..I can't believe how much he's grown. I just hemmed all his new school clothes only to unhem them before he could ever wear most of them. With EB kids, you have to celebrate every inch and every pound. We're still at 35 pounds though..On the other hand, We went through a rough time with Casey for two weeks. Thanksgiving morning he woke up gagging and coughing...Another blister in his throat. I can't put into words what it's like to wake up from a sound sleep to watch you child gagging to break a blister that has blocked off his upper airway..and then begin coughing up blood.. If we're LUCKY he coughs up the skin right away..not so lucky scenario is that it hangs in there gagging him until he finally gets it out or it comes up far enough for me to grab it and pull it free. That's right guys..it hangs out of his mouth and I yank it free. Those of you with EB kids can sympathize with me...EB is not for the weak hearted. .....Then over the next few days we listen to him stridor and struggle to breathe as his upper airway begins to swell. We go back on nebulizers and steroids..This guys is the reason we have not removed his trach. The episodes continue and they are impossible to manage without it. And why on Thanksgiving?? At church that week a friend said to me..."you know..god's will will never take you where his grace cannot protect you". I just smiled. I sat that day and really didn't hear a word of the sermon. I am very disconnected from accepting the word and I'm not sure I have TRUE faith any longer. I go to church and I just go through the motions..Alot of times I write a grocery list or clean out my purse while the pastor speaks. And it's not the church. It's a great church and great services.... Some people reading this will understand why I feel the way I do and others won't. Some will pity me and some will try to 'fix' me. Your help won't help..It's something I have to work out on my own... Anyway, we managed to have a pretty decent day believe it or not. Casey is one amazing little boy. I learn many of the most important life lessons from my son. He is so beautiful inside and out. Luckily now he is back in school and feeling well because we have a very busy December agenda and he needs to keep up!! :) On our list...See Santa and his reindeers (check), Pick out a tree and decorate (check), go to the two local parades (check) take pictures for christmas (check) make special ornaments with the family and kids (check) ..The only things left on our list is for the kids to shop for each other and their families ..This is the cutest part of christmas for me..when they break out their banks and shop for each other. Casey took out his piggy yesterday to get money to get his brother a tech deck..and Zachary took out his bank to get Casey a tech deck...I just love my boys. And this year my family beware...you get what the kids pick out this year ... :) I am not going to buy FOR them...And I bet you get the most precious things ...I still have an acorn and one silver earring in a pink ring box my neice gave me years ago...she's 21 and it's still special to me...<br />
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Becky is a cutie too. She is such a girl. She runs like a girl, smiles like a girl and loves all the girly things...Shoes, dresses and jewelry. I encourage none of it as I'm a tomboy at heart...it's just like instinct to her.. But what is sooo cool about Becky is that she is dressed in her fancy shoes and bracelets one minute and rolling in dirt the next. She is everything I've ever wished for in a daughter. <br />
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We also got to go to a great winter concert Zachary was in...He plays trombone in the band. This year he remembered to wear his suit jacket and didn't fight to take the tie off. Last year I dropped him off with a suit jacket and tie and when he walked on stage, his jacket was off, tie was not on and his shirt was hanging out. I almost passed out when I saw him. This year he's matured alot and he looked soooooooo handsome. (ok..maybe it wasn't EXACTLY maturing ..maybe it was the threats of violence I bestowed upon him when I dropped him off about removing the jacket this year? :)<br />
Well, Happy December all...Take time to enjoy all the magic of the season.caseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com0tag:blogger.com,1999:blog-4758104575241146462.post-17353182782870589292010-11-24T19:23:00.000-08:002010-11-24T19:25:20.614-08:00Happy Thanksgiving<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMsPyhd-Lf3r-Dvp5IGkPQ-xX-wmbm2rzyEjFxWXf8USMenmC9YpLaWFr71Cpr3oA8EbdMHBlt0A2nRlgbqxeia7pjaI2UsxoF80Es4hGGMhTiGS34sF2u_SMlgds7bP28VEuQn1s4wQFC/s1600/IMG_1143.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMsPyhd-Lf3r-Dvp5IGkPQ-xX-wmbm2rzyEjFxWXf8USMenmC9YpLaWFr71Cpr3oA8EbdMHBlt0A2nRlgbqxeia7pjaI2UsxoF80Es4hGGMhTiGS34sF2u_SMlgds7bP28VEuQn1s4wQFC/s320/IMG_1143.JPG" width="320" /></a></div><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Hello all and Happy Thanksgiving. Can't belive it's that time of year already. The holidays just creep up on me and I find myself unprepared every time. For Thanksgiving we will be joining my family for a feast at my sister's house. My children just love their Aunt Kelly..We always say she is their "mom away from mom"..like John and I could die tomorrow and as long as they had <strong>her </strong>they wouldn't even miss us... :) When we think about all we are thankful for this holiday my sister is tops on my list. I don't know what we would all do without her. My fellow EB moms know how one family member usually steps up to help in every way possible..to learn all there is to learn... to do whatever you need them to do..who is NEVER absorbed so much in their own life that they don't have time to spend with us. .....For us that is my sister. Let's face it, we are all busy..we all have things that take our time and obligations that keep us busy and prevent us from spending time with the ones we love..but we all find time to do what we REALLY want to do...It's not like we don't HAVE the time..we <strong><em>just choose to use it in other ways.</em></strong> I miss visiting my friends and family as much as I used to but it's just not so easy anymore. Casey's needs consume almost my ENTIRE day. To keep him alive, healthy, coordinate his care, keep up on supplies, Dr. appointments and therapies is a full time job and leaving the house most days is just not an option when it takes two hours just to bathe him. I thank the friends and family that understand that and am sorry for the ones who can't. </span><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">The kids have been good. Zach was chosen to participate in a day of trombone workshops with a trombone player from the metropolitan opera. It was a great oportunity for him and he really loved it. So many of our family members came out to watch him in his concert that night and for that he was so proud. Thank you guys for making it special for him. School has been going nicely for him this year too. He loves the teacher. He is such a smart boy. I can only remember a handful of times he did not score 100 on a test. And he got first chair in the fifth grade band..(may I brag that he is only in FOURTH grade) :) He really makes me proud. Becky is growing up fast. She is a beautiful little angel. She doesn't give me an OUNCE of greif. She's a special little girl with a special purpose in our family. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Casey has been good too. I almost hate to say it and jinx myself. The only problem I'm seeing that bothers me right now is that one toe is turning towards the bottom of his foot and the skin is tight and pulling it down. I've decided to unwrap them in the evening so that he can walk barefoot and sleep unwrapped and wiggle them around a bit in hopes of stretching it a bit.(I just pray his little sister doesn't step on them)...It's just one of the complications of EB..Anyone with any good suggestions, can feel free to email me..I'm not sure what to do about it..if he straightens the toe it pulls the skin and hurts..(Adele...any thoughts, you are my EB expert..... :) At his last physical he had gained two pounds and grew two inches. This is thanks to the great blended organic food diet his AWESOME nutritionist opened my eyes to. It has made an incredible difference in the vomiting and his energy level has doubled. He just looks healthier and feels so much better and wound healing is so much faster with the right nutrition.. And he is loving school. He's the class pet and I'm not surprised. He has the personality that can light up a room. The kids in school love him. We are due this winter for a bronchoscope..actually overdue. We keep procrastinating. I don't like to fly in the winter. We've had too many bad experiences with the weather..and the prices for airline tickets skyrocket this time of year..We've been looking at an average of 550.00 a ticket. That's not in the budget right now..Heck, bread and milk isn't even in the budget right now. Since Casey's been born I have never before been stretched as much physically, emotionally, financially or spiritually. I have just been drained. Casey has a sinus infection again..and the associated eye infections that go along with his. We're back on antibiotics..(the joys of preschool)..before that is was a stomach virus (the joys of preschool) and a cold (the joys of preschool) and pink eye (the joys again of preschool)...</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Well, as everyone gathers tomorrow, take a few minutes out of your day to reflect upon all you have in your lives to be thankful for. We all have more than we realize. We are all so hurried and busy every day that we tend to overlook our blessings ... Make sure your family and friends know how much they mean to you and tell your children how much you love them. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Happy Thanksgiving to all our friends and family and special prayers to all our EB friends..May you have a peaceful holiday weekend.</span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Hugs,</span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">John, Beth, Zachary, Casey and Becky</span>caseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com2tag:blogger.com,1999:blog-4758104575241146462.post-24858758886479924632010-11-23T18:37:00.001-08:002010-11-23T18:37:41.464-08:00<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH_-w2lDffJmg5Hvj5ziy9nQxB6T6S1TFrutzozmRnltwj_tzOtcLi9TtZEVJLi7mKnu2UM5iZpcuzt3GwWK9_7Q3CUOlaIlfNxSX-Z-EYcSStcTO8-dU1_G4TY4fFPhdnrytflQFUhZbV/s1600/IMG_1143.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH_-w2lDffJmg5Hvj5ziy9nQxB6T6S1TFrutzozmRnltwj_tzOtcLi9TtZEVJLi7mKnu2UM5iZpcuzt3GwWK9_7Q3CUOlaIlfNxSX-Z-EYcSStcTO8-dU1_G4TY4fFPhdnrytflQFUhZbV/s320/IMG_1143.JPG" width="320" /></a></div>caseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com0tag:blogger.com,1999:blog-4758104575241146462.post-45706943031471761442010-10-19T05:46:00.000-07:002010-10-19T06:44:13.534-07:00Hello..Can't believe it's almost the end of October and Halloween. We love the fall in our house..apple picking, pumpkin picking, trick or treating..thanksgiving...and cool weather for Casey! There are no other seasons that brings us so much fun. It's the time of year that Casey can get out of the house and enjoy the outdoors. We still have a few more outings on our agenda ..hope we can accomplish them all. <br /><br />It is a great relief to say that everyone here is doing good. My older son got his cast of after what seemed like an eternity. The bone is still not perfectly aligned but it is finally healed. The orthopedist says as he grows it will stretch and fall perfectly back in place. So, for the next few weeks he will have a fracture brace and that's just fine with him because he can take it off to sleep and shower! He is excited because he will be playing in an all trombone concert in November. He received a perfect...yes PERFECT score on his English language Arts state exam and an Above average on his Math state test..add to that he earned a Music Acheivement Award and a perfect mid semester academic report and it makes for one proud mom!!! Now if he could only organise himself we'd be really getting somewhere. <br /><br />Becky is 14 months old now. She is an absolute doll. She is the perfect baby...REALLY..I swear!<br />She is just a delight. She loves shoes..she wakes up and we have to immediately put her shoes on and she wears them all day..If you take them off her, she'll follow you around holding them up to you to put on again. Her speech development, as far as I am concerned (nobody else seems to be) is slow. She does say mama, dada, baba, apple, cat and ach (for her brother's name)...other than than she is just quiet. I don't know if it is the chronic ear infections and hearing difficulties she had for 6 months out of her life or the fact that being the third child gives her a disadvantage. See, she rarely has to ask for something.. The boys can both predict what she wants and cater to her. And Casey keeps me so busy I rarely have time to repeat over and over...Say "more"...by the third attempt I just throw her what she wants and go on to something else..I just don't have the time. She is running all over and enjoys EVERYTHING! She is just all smiles. <br /><br />Casey has been good. He's back to school (five half days in a three year old program)and loving it..I mean LOVES it. He has a great happy outgoing personality (quite the opposite of what I predicted a child with EB would have). He is the class pet..to the teacher and most of the kids. They just love him and he gets all his therapies in school. Our district pays for preschool five days a week, the bus, the nurse and all his therapies..who could ask for anything more!! Casey has had a bad foot injury and blistered both his knees when he fell chasing his brother through a spooky corn trail and he's on antibiotics now for a sinus infection I let go for way too long. I try to keep him off antibiotics at all costs. I can count the several times in his life he's been on an antibiotic for anything. But sometimes you have to concede to the antibiotic. He is going to be a devil for halloween. He's always been fascinated with devils for some odd reason. He says he wants to be a devil with a cape and boobies...(he thinks the muscles on the chest we saw on a devil stuffed toy are boobies)..and he wants a pitch fork so he can fork the kids in his class..(doesn't sound good!) He has a great sense of humor ..I hope he keeps it. Last night was the first time he said to me "I wish I didn't have bandages"..He said it as I was wrapping him so I'm pretty sure he meant he wish he didn't have bandages because he wouldn't have to sit still so long for me. I told him I wish I didn't have "rotten hair' and my older son said " I wish I was taller"..We all wish we didn't have things about us that we do. EB is just one of the things Casey has about him he will wish he didn't ..Not as if rotten hair compares...but when you are three I don't think the things you say have as deep a meaning as we adults think they do. We are probably going to head back to cincinnati for a bronchoscope this winter. Casey has been donig well. We have added vitamin D and fish oil to his regimen. Not much else new. I have gotten so much email about my thoughts on Bone marrow transplant for Casey. I do have my opinions on it and I'd be lying if I said I didn't struggle with it every day. It's a personal decision and one that has to be made on an indivdual basis. There's alot of soul searching needed to be done to explore your personal thoughts on the process and the outcomes. Right now from my perspective, it's still a clinical trial and not a "cure". I think it has a long way to go. Parents exploring this avenue now are inspirational to me as they are paving the way for my son to one day see a cure. But, placing your child into a clinical trial for anything is risky and I am quite the chicken when it comes to risky. I've never been a risk taker. We pray long and hard for each child going through transplant and we honestely root for them and celebrate when they reach a goal. I feel very blessed that parents have shared their journey with us and allowed us into their lives through the process. The are the bravest of pioneers.<br /> <br />Please pray real hard for the Ringold family. They just lost their daugther Bella. She had dystrophic EB like Casey. This is one that really hit home for me and I really miss this little girl even having never met her. Her family is inspirational. Pray for strength and peace for her family and add some prayers for Baby Elle in ICU and our friend Tripp who is going though some rough EB times right now.. We think of all these children as our own. The EB community is a small one but we all care for each other's child as if they were our own. We pray for each other when times are hard and celebrate each acheivement when things are good.<br /><br />Hope everyone is enjoying a peaceful start to fall.....<br />Bethcaseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com0tag:blogger.com,1999:blog-4758104575241146462.post-1321951448164269992010-09-06T10:34:00.000-07:002010-09-06T10:43:57.617-07:00Hello all..It's been awhile..but not much going on her worth writing about...The boys are BACK TO SCHOOL!! This is the first year that I have actually wished my precious angels away...It's also the first year I've had to face sibling rivalry...casey fights with Zach and becky annoys casey...It's been a summer of being peacemaker and I'm ready for a break...Zach's arm continues to be a problem.. One bone is closer to being in place but it's pushed the other one slightly out now. We go back to the orthopedist on Tuesday with him. we are hoping for an all good and a shorter cast so he can bend his arm. <br /><br />Becky turned one. It's always a significant milestone for me. She leaves "baby" once she turns one. I want to keep her a baby forever.<br /><br />Casey's been good. A few toe injuries this week but nothing he can't handle. He's back to preschool five half days this september. I hope he has a fun year.<br /><br />Happy Labor day!caseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com0tag:blogger.com,1999:blog-4758104575241146462.post-89469485415600045522010-08-01T20:19:00.001-07:002010-08-01T20:41:04.161-07:00Hello..It's been awhile since we've posted...I think it's just cause we have a sort of boring life...I think about updating and realize I have nothing interesting to write about..Things here have been good..Becky is set for surgery on the 19th of August..she has had ear infections one after another since December...so off for tubes we will go.. I hope we are making the right choice. Her hearing is not what it should be and her speech is not progressing...It's all scary to me....After casey you would think that nothing would scare us...but it does.. we pray as parents we are making the right choice..part of me says if we leave it alone, she'll outgrow it. The doctors say "NO". Anyway she is walking all around the house. It's so cute and in another month she'll be one year old. Where does the time go? she is truly our angel with such an important purpose in our lives that she can't even begin to imagine. she is our distraction from EB. She and casey have the greatest relationship. A few weeks ago she did hit Casey in the eye with a toy when she sat up suddenly as he was kissing her goodnight. That lead to our first corneal abrasion. Casey will tell you " beckaboo took my eye out!" Luckily with some antibiotic and lubricating drops it was healed in two days leaving it alone. We were very lucky with that one that it healed so fast. That was painful for him...In June we got to go to EB clinic in cincinnati. We hadn't been there since he was one so it was nice to catch up with everyone there. All went good...His echocardiogram and EKG was normal. Normal Dexascan (bone density).. His vitamin D on blood work came back on the low end so we are supplementing with some extra vitamin D to prevent the borderline osteopenia he has. With exercise, good nutrition and some extra vitamin D it will stop the progression...We have increased his g-tube feeds from 4 ounces to 8 ounces a feed by going up 10 mls a day. It worked like a charm...turns out we shrunk his stomach giving him such small feed while he was sick most of the winter.. we also had alot of vomiting and poor weight gain with the pediasure so we switched him to a blended food diet. the vomiting has stopped, his energy level has tripled and his wounds are healing so much faster. This is the single best thing we have ever done for him. He's gained four pounds...Yes, it's a HUGE pain to mix and figure out the nutritional requirements but it is soooo worth it. His bronchoscope of his lower airway in the office was clear...the upper airway will be done in the OR in the fall...He has some heat rashy patches on his back and neck for which we are using a new cream...we thought it was a fungal infection but cultures came back negative....other than that, his PT and OT evals were good..he has no issues with his hands or hand function...we added a new pain med to his regimen for that extreme pain he gets with some injuries. We got to meet lots of EB families while we were there and it was such good therapy to talk with moms who could understand what I go through..The kids we met were incredible...I admire every one of them...they are all my heros. <br />Please send some extra prayers to Daylon and Bella going through transplants right now in hopes of a cure.. they are both going through rough times and could use some extra prayer.<br /><br />Casey will go back to preschool in september five half days ...and his nurse will travel with him to and from and remain with him in class. He loves school and can't wait for september. We went to meet his new teacher yesterday and I think he's going to have a great year. what a great and supportive school.....John is still working at the hospital but looking to get out ...he wants a slower paced job closer to home...I still work one day a week at the doctor's office ..It's boring work but I get out of the house and the extra money is soooooo needed...My older son continues to play the trombone..It's his happiness in life. Nine has proven to be a rough age.. I find him trying to express his independance lately and fit in with his peers a bit more....He is still such a good boy who got awards in band and a perfect report card..he makes me so proud. <br /><br />Well that's it for now...I am going to try to post some pictures..I don't know how yet...but I'm trying to figure it out....<br />bethcaseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com1tag:blogger.com,1999:blog-4758104575241146462.post-14337687337454151402010-06-05T14:13:00.000-07:002010-06-05T14:17:08.885-07:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4PYqAEuU_LuEZiAm4IKY0VrR3r6OUJe1CJnyCbTiYdCJJM7jgriOwjAw_PjaDKk_Y4HHVlyT-ouDVch1albxFqxaRrwZTfnT22tiIjZMJJekgLnAKfMJlZM9IUXhBt4qt8Uq9Vdj75S0N/s1600/IMG_9664.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 159px; FLOAT: left; HEIGHT: 213px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5479401144622829490" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4PYqAEuU_LuEZiAm4IKY0VrR3r6OUJe1CJnyCbTiYdCJJM7jgriOwjAw_PjaDKk_Y4HHVlyT-ouDVch1albxFqxaRrwZTfnT22tiIjZMJJekgLnAKfMJlZM9IUXhBt4qt8Uq9Vdj75S0N/s320/IMG_9664.JPG" /></a><br /><div></div>caseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com0tag:blogger.com,1999:blog-4758104575241146462.post-19675536252631959332010-06-04T20:12:00.001-07:002010-06-04T20:31:33.100-07:00Hello all.....Just a quick update..I don't know how people get on every day to update..I'm been so bad at it..Life with the three kids just keeps me sooo busy..I can't find the time...We've been falling behind on our yearly visits with Casey...so we decided last month to catch up...He had his three year old well visit..he is up to 31 pounds...what a struggle it is to keep up his weight....It's worth every moment of it though as I feel nutrition is the key to EB....We had blood drawn..all is normal with the exception of a few markers for inflammation...that's to be expected with EB. His iron had tripled from what it was last year...so all is well there..his bronchoscope was clear...esophagram, EKG and echocardiogram all good..dexascan showed mild osteopenia..No intervention required there they say...his calcium and vitamin D levels were all normal..so they say no intervention is necessary...Although deep inside I feel we should supplement with some calcium and vitamin D. I've got to look into it for doses. Anyone who has any suggestions or are using supplemental calcium or D email me ...He's been at a rotten state of breakdown the last few weeks...I think it's a combination of being wrapped like a mummy in near 90 degree heat...we just turned our air on...a new evening nurse who just can't remember not to pick him up under his arms leaving huge blisters on his underarms...moving onto underwear from his padded diapers and out of the crib into a real bed...we've had a few head scrapes from the siderails until he got used to it..finally this week he is looking good like his old self again.<br /><br />Becky is still getting ear infections and we are debating tubes....we are just trying to determine now if the fluid clears up between infections or not...it's not the number of infections you get I found but rather if the fluid remains ..I've pretty much decided that if it is not affecting her speech or hearing and the fluid dries up...I'm going to wait it out till cold season and teething is over and see how it goes..her visit with the ENT showed no fluid after the last one and her hearing was perfect..casey's speech therapist evaluated her and says she is right on target...so, we'll see how it goes.<br /><br />Zach is doing great..he is the most awesome kid in the universe.. his all state band performance earned him a gold ribbon..the best you can get and did I mention he was the only third grader ever to be allowed to participate..he is a great trombone player and he still gets straight 90s and 100s in his acedemics..He is sooo cool . <br /><br />Well, we are off to cincinnati children's hospital for follow ups with the ENT and Surgeons there..then we'll go to dental and opthamology and a visit at the EB clinic....It's going to be a busy two days..we leave the 16th. What I learned from planning this trip is that if you fly for medical reasons you can get a free flight if you know the right person to contact. we got three VIP seats for free from Delta..Taxes and luggage included. Always remember to ask if you guys are ever traveling..I know continental does it too and not many people know about it.<br /><br />well, that's about all. Tuesday I am going to a play my zach is in at school about butterflies..he is the grasshopper...I couldn't be prouder... :) Then casey and zach both have field day that week..casey's luckily is preschool and indoors..I am going to try to figure out how to post some pictures of their birthdays, etc one day....That's about it from our house...Hope everyone is enjoying a peaceful time....<br />bethcaseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com0tag:blogger.com,1999:blog-4758104575241146462.post-48899971521782880172010-05-23T06:13:00.000-07:002010-05-23T06:35:00.674-07:00well, hello everyone..I have not posted since January...boy time sure flies...casey turned three this week. My Zachary 9. I don't know where the time goes..casey had strep for this birthday. The poor kid can't catch a break! The day before he had an esophagram..No strictures...well, at least we THINK there are no strictures...and if there IS, they have to be insignificant....He cooperated nicely for the first half of the test, but the second half..lying on your stomach part..he decided he was done and we couldn't go any further..he got upset and vomited barium all over his daddy. so, we think it's good..the films will be put on disc by radiology and sent to his surgeon in cincinnati to review. We have an echocardiogram scheduled this week (routine yearly) and a baseline dexascan (bone density) to get in before the end of the month. Then I believe with the exception of a dermatology and GI visit and a trip to cincinnati, we are done for the year! (EB keeps you running). Casey is now potty trained..that is during the day at least...he still wakes up wet in the morning...but we've come a long way..in return his reward was a new "big boy bed"..My baby no longer wears diapers or sleeps in a crib..I feel he's all grown up! :) <br />Zachary's band played at the state music festival and scored a gold rating...the best you can get..He loves his trombone and he is soo good at it. he is the youngest one to play in the band.. I am very proud of him and he aces school...all top grades..<br />Becky is 9 months old now. She is crawling and standing up and destroying my house and my patience..At 42, I am just too old to chase an infant. She is the most patient and content child I have ever encountered. She is happy every moment of every day. She is just beautiful..<br />And yesterday I turned 42..... Casey got a pool for his birthday..he loves the little pool...unwrapping and doing bandage changes afterwards is rough.. I am going to try to post some pictures later this week..as soon as I figure out how...caseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com0tag:blogger.com,1999:blog-4758104575241146462.post-33149772982801996892010-01-29T11:05:00.001-08:002010-01-29T11:22:48.518-08:00Hello..Just wanted to let everyone know that Casey's bronchoscope showed a clear airway again. So, once again, we are forced to revisit the same old question. Do we remove the trach or do we leave it in?? My maternal instincts to protect him say ..NO...My desire to move him forward and the realization that his trouble may have been a one time thing makes me doubt my decision. He has had a clear bronchoscope 6 times in 18 months..basically since the first episode...so, the surgeons want it out...and by the way..they are the two most fantastic men I have ever met..especially in medicine..and probably the most experienced with EB in the world..I trust them, but HEY..it's not THEIR kid if they are WRONG!! So, we will revisit it in 6 months when we are able to save enough money to fly back to Ohio... His esophagus is clear of strictures too, which is good news as well. With EB you have to take the good when you get it..sometimes it throws you a bone..and other times it just punches you in the face...The unpredictability of this disease is what scares me the most. But for now, I will enjoy the easy time ..knowing at any moment it could change. Zach is still enjoying his trombone and is now helping the younger kids in the band..He is the first third grader allowed to play with the fifth grade band. Becky is 5 months old now. She is teething like a monster. She is an angel. The kind of baby that makes you want to have 12 more. Luckily I have Casey ( who although a blessing, makes you never want to have another one!) to even out my thoughts.. Hey, I like this blogging thing..It's like therapy without the $300.00 an hour bill! Thanks everyone for your support of our family....caseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com0tag:blogger.com,1999:blog-4758104575241146462.post-84734554779261090492010-01-27T06:00:00.000-08:002010-01-27T07:13:03.889-08:00Well hello all. I have been trying to put this blog together for almost a year. I still have to add some links and information and fix it up a bit but for now, it's up and running! It is so hard to email everyone who asks about our son individually so at your requests, here you go..this blog's for you!! Please log onto our page and follow our journey! I have vowed to share the good, the bad and the crazy! I'll begin posting later in the week, but I wanted to let you all know I finally did it! :)caseymommyhttp://www.blogger.com/profile/16009536365889892990noreply@blogger.com0