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Sunday, September 25, 2011

We Finally Did It!!

Hello everyone! Sorry it took so long for me to get this blog post up. We have been so crazy busy lately! The week before Caelyn's surgery we went to the Labor Day parade and Caelyn had so much fun! Her favorites are the marching bands, police cars, and fire trucks. She loves her loud noises!! And she even got a sucker or two!



Now onto the reason why your here: surgery. We got to Rainbow around  3pm on that Sunday and they did not have a room available for us so we had to occupy Caelyn for about 20 minutes until we could get a room. It was kind of fun checking into the floor because all the nurses remembered her and were amazed at how great Caelyn had been doing! After Caelyn went to sleep that night Caelyn got hooked up to all of her monitors for the evening for her testing. When her nurse came in to check on her in the middle of the night, she informed me that Caelyn's surgery was going to be at 10:30am the next morning and  that they would probably be there to get her around 9am.

The next morning, we went out to the car to get some things that we had forgotten and when we got back they were there to get here already! It was only 7am!! We were not ready for them yet! We walked Caelyn down the the pre-op area and stayed there with her while they got her prepped and we talked to her doctors. They were going to do an MRI first and then would do her bronchoscopy and trach removal. Her ENT doctor said that they would do the bronch, cut out the scar tissue and then sew her closed. She would go back to her room and we would go home the following day. Then I talked to the pulmonary doctor who said that her test results from the previous night was kind of iffy so they were not sure if they would remove her trach or not. They did a CO2 study and she said that Caelyn's levels overnight went to 60 (with normal being 35-45). At this point we were very nervous. Of course we wanted Caelyn to get her trach out because it would be so much better for not only her, but all of us! On the other hand, we were really nervous because of the test results. We for sure wanted to do what was best and most safe for Caelyn. All we could do at this point was pray and see what happened when she got out. They told me that Caelyn would also be getting an echo cardiogram because of the high levels of CO2 they wanted to make sure her heart wasn't working too hard. They told me that Caelyn would be in surgery for an hour or two. Now time to wait...



3 hours in and we still had not heard anything. I asked the secretary at the desk and she called back to surgery. She said that Caelyn was with ENT now (which was last on Caelyn's to do list) and that they were just finishing up. Now I'm so nervous I'm shaking. I just want to see my baby. Does she have a trach? Does she not? Another hour goes by and we haven't heard anything again. So once again, I go up to the desk and list the things that Caelyn was supposed to have done and asked her if Caelyn was finished with all that. She calls back and tells me that Caelyn had her MRI and her bronchoscopy, but she did not have an echo cardiogram and that the doctor would explain why. They said  that she would be heading to recovery and they were be calling us soon. By now my mind is racing? Why didn't they do the echo? Maybe the decided to keep her trach in. I'm so nervous I can't sit still and I'm nauseous. Finally after all this time, Caelyn's pulmonary doctor came out to talk to us. She said that the test results they had given her from the night before were wrong. Caelyn's levels stayed between 17-30. Which is awesome. I was so relieved. She also informed us that they did remove Caelyn's trach. I let out a huge sigh of relief. She said they didn't do the echo because the test results were wrong and they were running extremely behind schedule. Then she explained Caelyn's situation to us. She said that they removed Caelyn's trach, but they did not sew the hole closed because the was still a small area above where her trach was that was kind of narrow. They did not want to sew it shut in case there was an emergency and they had to re-trach her. Also, with letting the hole gradually close on its own, it would give Caelyn more time to adjust to breathing on her own through the narrowing. She informed us that Caelyn was recovering in the PICU and that we could go see her.

I just about ran the halls to get to Caelyn! I was so excited and anxious to see her! What I saw when I walked into the room, however, was a very scary site. Caelyn was screaming at the top of her lungs (however she was hoarse so you could barely hear her) and she was kicking so hard she was throwing herself almost a foot off of the bed. She had a nasal trumpet in her nose and she had an oxygen mask on. I had never seen her act like this before!! She was being a wild woman! As I continued watching her, I realized what was going on. She was freaking out! She kept reaching for her trach and it was gone! Poor baby was crying and hyperventilating and everything! She had a really rough time for about 4-5 hours. They did not want to give her anything to relax her because they wanted her to be awake and alert to learn how to breathe on her own. However, after about 5 hours of non-stop screaming and kicking they finally gave her some Morphine. Then she finally settled down. We got to breathe for a little and update the family on Caelyn's situation. Then, Caelyn woke up again. She reached up and grabbed for her trach and off we went again; screaming, hyperventilating, kicking. So she got another dose of Morphine. This time she actually managed to sleep through the night.




The next day we went to the regular floor and ended up being able to go home to the next morning. The next few days were pretty sad. I felt so bad for Caelyn! She would reach for her trach and just cry and cry. It was so heartbreaking! I would imagine it would have to be so hard for her to have something that was a part of her and her comfort taken away.




After coming home for the hospital, recovery has been great! Caelyn was breathing better everyday and is now back to normal. She is back to her giggly little self and we are looking forward to her spending the night with grandpa and grandma sometime soon!

Thank you to everyone for your support through this time! We appreciate all your thoughts and prayers. It means a lot to us!

Saturday, September 3, 2011

How To "Manage" Your Special Needs Child and the Importance of a Medical Notebook

First a quick update on Caelyn :)

She has been continuing to do well. She got to try out her stander at Early Intervention this week. She did so good! She did not fuss at all! She was in it about 10 minutes before we took her out. I'm anxious to see what she does in 2 weeks when we go back! I know that when we bring it home she will love being able to be in it and see/play with her big sister.


We went to the movie theater last night and watched Winnie the Pooh. Caelyn had so much fun! She giggled throughout the first 30 minutes and then she fell asleep! Hahaha. We went shopping today and I just had to share this picture. It's too funny! Caelyn's daddy set his wallet down on her lap and looked away for 5 seconds. When he looked back this is what we found:



Looks like someone is learning early!! (Miss Amy, you would be so proud of her reaching and grabbing!!)


I wanted to make a short post on the importance of "managing" your special  needs child. I cannot express the importance of being involved in every aspect of your child's care. You are your child's best advocate. If one doctor will not listen to you or you do not get the answers you were looking for, go to a different one. Go to 50 different ones if you have to. I went through 3 doctors until we could finally find one that was willing to listen to us and start us on the right path. Trust your instincts; you know your child best.

Go to every doctor's appointment possible. Attend all therapy session when you are able. Find out what you can be doing with your child at home to maximize their care. Know what medication your child is on and the dosages. It is also helpful to know which medications your child has been on in the past. Know what past surgeries/procedures your child has had. Know your child's diagnosis and gain as much information about their condition as possible.

As helpful and important as all that is, it will do your child and their doctors no good in an emergency situation. If there was a situation in which an emergency would arrive and you were unable to be with your child, the doctors would be in the dark as to your child and their situation. That is why it is really important to have a medical notebook that stays with your child at all times. Check out this website for really great information on a care notebook, how to create one, what information should be in it, etc.

Please comment on our facebook page here and let is know if this information was helpful to you and if you have any questions! Thanks! See you next Friday :)

Friday, August 26, 2011

Back To The Waiting Game...

Miss Caelyn has been quite busy with cutting teeth her lately. She was cutting 6 teeth at once (4 of which are molars) and now we are down to 3 teeth waiting to come in. She has been a trooper throughout the whole ordeal. She is hardly ever fussy and I have only had to give her Tylenol once. Thank goodness you cut teeth when you are little because it sure looks painful!!


This week Caelyn got to see an old friend. Miss Kristina, her PT from Rainbow. She had been following Caelyn's progress via the Internet but it is definitely something different to be able to visit in person. Thank you Miss Kristina for coming to visit us! It was great to see you!!



Caelyn has been doing great at therapy. She has been doing awesome at sitting up and she is making such great progress with her eating. This week she was given a sour apple sucker to eat at therapy and she devoured it! She loved it so much! She even kinda fussed when we took it away from her. In fact, she liked it so much that she even attempted to hold onto it for a few seconds! That is a big deal for her!!




We spent the past week playing as much as we could before school starts for Caelyn's big sister. We had fun swinging at the park and Caelyn even went shopping with us at Wal-Mart. She is slowly learning to sit in the carts, but she still needs a little assistance.






We got the rest of our pictures back from Amy Cook Photography and they are amazing! Please go "like" her page and tell her that we sent you! You can see the rest of our photos from our session with Amy here on Caelyn's page.

We are once again back in the waiting game. I got a call from the hospital today to inform me that they rescheduled Caelyn's surgery. Her surgery is now on September 12th. We were so excited and now we have to wait 2 more weeks. EEKKK!! The anticipation is killing me!

Don't forget to "Like" us on Facebook, and send your friends! I'm always sharing useful information! See you next Friday!

Friday, August 12, 2011

Awesome news!


Before we left for vacation Caelyn had her appointment with genetics. They basically said what we hear all the time, "We are thinking about Caelyn and thinking about a diagnosis all the time." I came prepared with a list of about 10 possible diagnoses that might apply to Caelyn and they immediately ruled out 8 of the 10. They ran tests for 2 out of the 10. We should have the answers by the end of next week. They also referred her to a developmental pediatrician to get a full developmental assessment. Also, they said that she should apply to the NIH rare undiagnosed diseases program. I checked out the program and they are not accepting applications at this time. We will keep checking and apply when we can. They only take on about 50 cases a year, but we are hoping for the best!

It has been a pretty fun week for Caelyn. We have been on vacation in Oregon, OH visiting family. Caelyn got to do lots of fun things that she doesn't normally get to do. I am also fairly sure that she enjoyed having a week off without having to see any therapists or doctors. *Miss Susie, Miss Jen, and Miss Wendy....if your reading this, I'm SURE Caelyn missed you guys!* In the midst of all the fun, Caelyn did manage to cut a molar, but the poor kiddo is still in the process of cutting 5 teeth. Since she doesn't chew on anything they seem to take forever to come in!

So we have GREAT news! While driving earlier this week I received news from Caelyn's doctors that her surgery date is August 30th! She will be getting her tracheotomy removed on August 30th! We are so beyond excited! This is such a blessing! We can finally breathe a small sigh of relief as this will remove some of the weight of my husband and I's shoulders. We are not only excited for ourselves, but for Caelyn and the whole family. Caelyn will now be able to spend the night with family and spend time with other people along with her sister. She no longer has to have us tag along with her everywhere.

Caelyn had a lot of fun going shopping and getting lots of new clothes for school. She enjoyed all the extra attention she received and liked all the longs trips in the car and riding in  the stroller all day.



Caelyn also got to go swimming. She loved every minute of it! She is such a water baby! I think it is so funny though because she screams throughout her whole shower, but loves the swimming pool and water parks! That is just like Caelyn though, she has her own mind and is very stubborn. Here she is in her new swimsuit.




While we were in the area, we took the time to get together with a good friend of mine, Amy Cook. Our girls are the same age and they loved playing together! She has her own photography business and she took pictures of our girls at the beach. Caelyn was pretty grumpy throughout the entire session because her teeth were really bothering her. She refused to stand in  the water at all, but she loved sitting it and splashing in it. Amy did an amazing job with our pictures! Here is a sneak peek of our pictures, be sure to "Like" Amy Cook Photography and tell her we sent you!










Wednesday, July 27, 2011

Modified clothing for Tubies

I wanted to take a minute to discuss and share my experience with modified clothing for tube fed children. I have never heard of modified clothing before a few weeks ago. It is possible to go through life without using any modified clothing, but using it does make it a lot easier. Caelyn's first piece on clothing was an adorable modified onesie that we had won by a referral game through Button Patches Wear. Let me tell you, that onesie had made life so much easier for that one day! We know longer had to undress her everytime we needed access to her button. She also puts strips on her onesies to guide the tube so that the kids don't constantly pull on the tube. She has tons of cute designs and she will even do custom orders. I plan on ordering many more from her in the near future! Please go "Like" Button Patches Wear and tell her that I sent you =)

Ronald McDonald House

I wanted to take a minute and write about our experience at Ronald McDonald House of Cleveland. Check them out and let them know that we sent you =)

Caelyn was in the PICU for 2.5 months before I had even heard anything about RMH. I mean, I had heard of it before, but I did not who was eligible to stay there, the requirements, etc. Finally, someone at the hospital had mentioned that I would be able to stay there while Caelyn was in the hospital. So I got the number and I gave them a call. They took down all of my information, asked a lot of questions and then informed me that there was a waiting list to check in. I had them put my name on the list and held my breath. I was nervous. What is it going to be like? How am I going to afford it? That night I got a call saying that a room had opened up and I was able to check it. Let me tell you, I am so glad that I did.  RMH was such a life-saver for our family. I never left Caelyn's side and I was spending upwards of $50+ a week on food alone. Then add into that the stress of being in the hospital 24/7, away from Chloe and never able to get any quality rest. When I checked into RMH I was able to bring my grandma and Chloe with me. That meant so much to me. Caelyn and I had been away from Chloe for 3 months and we all missed each other dearly. That is something that meant a lot to us. Being able to stay together as a family. RMH has a lot of things for kids  to do. They have a playground and a play room and numerous activities/programs to keep the kids entertained. They understand that this is a stressful time for them also.

The other thing that we really enjoyed were the home cooked meals. Until you are put in the situation of having a child in the hospital, you will not understand how much you appreciate the little things. It is so nice  to come back to RMH after a long day at the hospitals and not have to worry about cooking on top of getting grouchy siblings ready for bed and getting rest yourself. RMH tries to have at least one hot home cooked meal a day, somedays all three meals were provided. If there is not a meal provided, RMH has 2 kitchens with pantries, refridgerators, freezers, stoves and microwaves where there is always food available (free of charge) for you to cook for your family anytime you need it. They always have quick snacks sitting on the counter also. This is truly a blessing to families in need.

RMH really is great place for families. We have been there on 4 separate occasions and they have helped our family so much! They have programs for families sometimes. I remember on one occasion when I was there, they had a massage therapist and I was able to get a FREE massage! Let me tell you, that is a blessing after a stressful day at the hospital!! I also really appreciate that they have a computer room. This enabled me to post updates on facebook and keep in touch with my  family. A lot of times they have tickets that have been donated to local events. Because of the generosity of these people, I was able to take Chloe and my grandma to both Boo at Zoo and the Carrie Underwood concert! Talk about amazing! It was so nice to forget about the stress of our situation if only for a few hours!

Long before I found out about RMH, I was using the RMH family room inside the hospital. This room is set up to give families a break while they are in the hospital. There is a computer (which I often used to update family), a play area for kids, books, snacks, and really comfortable furniture =) . I visited the family room often for snacks (to cut down on the money I was having to spend on food), to post updates on the computer, and to just get a break from the stress every now and then.

RMH is an amazing organization ran by amazing people and they can always use your help. Here is what you can do:
1. "Like" RMH on Facebook so you can get their updates
2. Donate now securely online
3. Sponsor a Room
4. Planned Giving
5. Purchase Items For Their Wish List
6. Donate Pull-Tabs

Here are some pictures of Chloe enjoying her time at RMH



YUMMM! Chocolate Pudding!

Hello to all of our new followers!! Caelyn continues to do awesome. She is improving everyday. We went to her Ear, Nose, and Throat check-up last week and we got the news that he wants Caelyn to get decannulated (tracheostomy removal) within the next couple of months. We are beyond excited! This is BIG news for us! Granted she is able to go through with it and do it well, this will mean a huge lifestyle change for us. We will no longer have to have nursing in our home and Caelyn will be able to stay with relatives, both short visits and overnight stays with big sister! That is so exciting because family has never been able to keep Caelyn before because they are not trained in tracheostomy care and emergency situations. This means mommy and daddy can finally have some time alone with kids! yay!

I just love watching her grow up. She continues to amaze her doctors and therapists all the time. We are making a little bit of progress towards standing. She will now bear weight on her feet for about 1 minute at a time. I'm confident that with hard work and God-willing my baby will learn to walk! She is very vocal, but is still only making vowel sounds. We are working on her with communication. We play for awhile and then we stop and ask her "do you want more?" or "do you want to go?" or my favorite, " Ready....set....." and we wait for her to make some sound to signify "more", "yes", or "go". Then we praise her and we go some more. She gets such a big smile on her face! She knows we are so proud of her and she is proud of herself. She is also learning how to use switch toys more and more. The thought is that if she is ultimately not able to communicate, that she will eventually be able to learn how to use communication devices such a speaking boxes to help her communicate with others. Her therapists were so proud of her on Monday! She worked so hard and did amazing work! At speech, she even got to eat animal crackers dipped in chocolate pudding. You can see she really enjoyed that!!


At home, Caelyn is busy learning and growing. She is also fussy most days because she is cutting a mouth full of teeth. There is not one spot in her mouth that does not have a bud trying to pop through. We are busy getting both girls ready for school. Caelyn starts back to school next week, and big sister goes back on the 22nd. So between teething, getting ready for school, therapies, and playing/learning at home Miss Caelyn has been quite the busy girl!

Next weekend we will be traveling to Toledo to visit family. We will also be getting our pictures at the beach by a good friend of mine, Amy Cook. Check her out and tell her that I sent you! She does amazing work and we are excited to get the girls' pictures taken! I will post some when I have them!

Wednesday, July 13, 2011

A Brief Update

Sorry I have not had the time to post as much as I would like. We are trying to get out and enjoy the weather as much as we can!

Things seem to be going very well for Caelyn! We took a trip to the Columbus and Zoombeezi Bay. She wasn't interested in much at the zoo except for the fish. She was absolutely fascinated by the fish! She even did the interactive experience. Caelyn touched a sea urchin, a hermit crab, and a starfish. She even got us in trouble with the starfish because she picked it up and took it out of the water! Guess she just wanted to take home a pet ;)


We watched the fireworks on the Fourth and Caelyn enjoyed them. She slept through the first 5 minutes and then woke up with a coughing spell. Once she was awake, she was fascinated by them. Every time one would go off, she would giggle out loud. It was so cute to watch!

From a medical perspective, Caelyn is doing really well. Her doctors are considering removing her trach this coming fall. She has to go back at the end of the month for a follow-up. We are hoping for good news! She is also going to be going to see a G.I. doctor soon because she has been having blood in her stomach frequently and the doctors can't find an active source of bleeding. G.I. will probably want to do a scope, and we are hoping that they don't find anything serious!

Caelyn is doing really well with her therapies. She finally gets to start OT next week so we are really excited about that! Speech has been going really well. Caelyn is learning the concept of communication being a two-way thing and it is so awesome watching her learn. She might not be able to express herself quite yet, but its amazing how smart she is! She has been learning to eat fruit loops, rice krispies, jello, and lots of other fun things in therapy. Of course she hates it, but she is making really good progress! PT is also going really good. She is starting to stand, which is awesome because before she would not bear any weight on her legs at all. She is also trying to learn to push up on her hands. Caelyn has also begun using switch toys. She hits a very sensitive button with her hand and it lights up, vibrates, and plays music. I just love watching her learn and interact! She is just so amazing to me!!

She had her check-up with the pedi today. She is 22lbs and 12ozs. She is 31 inches long. She is getting so big! I will post more next week, she is cutting 5 teeth and she got two shots today so I have one grumpy baby to take care of!!

Friday, June 24, 2011

Maybe no more glasses in our future?

Caelyn had her eye appointment yesterday and he said that she is doing great. He was very pleased with her progress and said that in the future she may outgrow her need for glasses. He said to watch for things like her constantly taking her glasses off and still doing fine without them. That would be so great for her, though at the time being she is perfectly content with wearing them.

She is doing great today and she has such a funny personality. She is so stubborn and strong-willed and she has quite the temper (I wonder where she gets that from haha)! If you talk to her and say something she doesn't like, she will always roll her eyes at you. She also shakes her head "no" all the time! If she really wants to let you know she not happy we have caught her a few times saying "uh-uh". Its so funny and too cute!! If she really is not interested in what is going on she will turn her head and close her eyes. I think she thinks that if she can't see us, we can't see her. Her favorite time to test out this trick is therapy...it doesn't work. Her therapists all say she is going to make a great actress someday!

Wednesday, June 22, 2011

After her surgery to now..and some good news!

Caelyn has been doing great! She has been doing awesome with therapy and making progress like crazy! She got the okay to resume oral feedings back in November and it has been a constant struggle. Caelyn is very orally adversive and struggles with eating textures. Its still something we fight with on a daily basis. Though, we are fully comfortable now with tube feeding we are beginning to realize that that is not the case for a lot of people. Now that it is summer and we are out and about doing things we are beginning to notice that people often stare at Caelyn and while at the zoo a little boy told his mom, "mommy, that baby is weird." It makes me sad that Caelyn will have to struggle with these types of things her whole life. Now we just just try and educate people about tube feeding and that it is normal. Some kids eat by bottles, others a spoon...ours eats by a tube. No big deal =)




Caelyn went to an eye appointment in early February. They discovered that she was very far-sighted and that one eye was stronger than the other and that was why she holding her head to the side. We had to special order frames from a company that makes glasses for special needs children and we finally found some that fit! Here she is in her first pai of glasses:



Shortly after, Caelyn had a follow-up appointment with her Ear, Nose, and Throat doctor and a hearing exam. Right now, they classify her as having borderline normal hearing. It is something that we are keeping an eye on. She has to have hearing tests every 6 months. Her doctor then discussed capping with us. He said that he felt that Caelyn would be able to begin capping. Capping is basically closing off the trach so that she is able to breathe on her own. She has done so great on it! Within 3 days she was wearing the cap for 12 hours a day with no issues!! Her doctors would like to see her do one more winter with the trach and then they are hopeful that she would be able to get rid of the trach next summer.

Last Thursday we have hit a snag in the road. Caelyn seemed like she was having a really hard time breathing and her lips were turning kind of blue. I hooked her up to her machine and her oxygen saturation levels were only 79%!! Scary!! I took her cap off and she was fine. So I put her speaking valve on and she was fine. Weird. So she was having some sort of difficulty breathing on her own. I made an appointment with her doctor and the earliest they could see her was Tuesday. Yesterday was her appointment and he said that she has a lot of scar tissue on the inside of her trachea that was building up. He also said that she had a superficial infection at her stoma site. She is on a 10day course of antibiotics and he is hoping that once the inflammation goes down she will be able to breathe on her own well again. She has to go back to see him on July 21st and at that time we will evaluate our options. If she is not doing any better and unable to wear her cap, she will have to have surgery to remove  the scar tissue. If she is doing well and we are able to, we are going hold off on the surgery for a few months because her doctor is hoping that we might be able to just get rid of the trach all together! We are so excited!! That would be such a big moment in all of our lives if we could get rid of the trach! Here's to hoping for good news in a month!

The Day Our Lives Changed

We were finally able to take Caelyn home and she was doing great! We were adjusting well to the tube feedings and  they seemed to be going good. After just two short weeks at home, Caelyn starting having increased work of breathing and she seemed like she was having a really hard  time. I took her into her peditrician who hooked her up to a pulse oximeter machine and found out her oxygen saturation was only 88%. He recommended that we give her albuterol nebulizer treatments every 4 hours and come back in two days to see if things were improving. Well, I didn't think they were and when we went back it was confirmed that they weren't. Her oxygen saturation was still pretty low and she was having a really difficult time in breathing. Her peditrician recommended that we check back into Rainbow Babies.

They admitted her and right away her oxygen kept dipping into the low 80s. They put her on oxygen and I was so confused. I didnt understand what was going on. She was just fine 2 weeks ago. Why was this happening? We were on the 6th floor for about 3 days with Caelyn on oxygen trying to figure out what was going on.


At the end of the third day, some doctors from pulmonary came to talk with me. They said they felt it would be better if Caelyn went downstairs because they would be able to watch her closer down there and give her more one-on-one attention. I didn't know at the time, but by downstairs they meant the PICU. Man, that was scary having my baby in the PICU and no knowing what was going on or if she would be okay. We were in the PICU for two months. In the course of these two months, Caelyn went apneatic on multiple occasions and would constantly desaturate; sometimes all the way down to 13%. They finally came to me and said that they thought the best decision for Caelyn would be a tracheostomy and a gastric tube. I was shocked. I couldn't understand. Caelyn was just fine two weeks ago, and now they have no idea what is wrong with her, but they want to do life changing surgery?? We thought, prayed and debated for a long time but they were trying to rush us because they said that Caelyn really needed this to be okay. So we finally decided to go ahead with it and on September 30, 2010 Caelyn had her surgery. Our life was changed forever. Caelyn now requires 24/7 care and she cannot go anywhere with me, my husband, or her nurse.



I was so relieved to see her after surgery, but all I could do was cry. She looked so pitiful! I was also feeling sad about how her life was going to be from this point on. Then we had some lighter moments. Cory and I just had to chuckle at Caelyn because they had her on morphine. When she woke up her eyes would be spacy and she was would have this look on her face like she didn't have a care in the world. It was pretty comical. She recovered very well and she was off of the ventilator later that night. She did amazingly well with her recovery and her development seemed to improve by leaps and bounds. She hit a small bump in the road however when she got a sore around g-tube site which turned into MRSA. It was really painful for her, and we had hold off on her PT for a little while.



After a long 2 month wait we were finally able to out of the PICU and Caelyn headed upstairs to the 5th floor. We had to stay here for another couple of weeks while Cory and I both went through extensive training in how to care for Caelyn and all of her needs. While we were here Caelyn met some incredible therapists that helped her tremendously. Then the day finally came when we were able to go home. We were so happy, excited, anxious, and nervous all at the same time! This is when they set Caelyn up with home nursing. This has helped us so much! They watch Caelyn overnight so that we are able to sleep. I know it doesn't seem like much to them, but it makes a world of difference to me not to have to wake up with Caelyn 10 times a night and then take care of her all day long.

Over the next couple of months, Caelyn would be in and out of the hospital 3 times dues tracheaitis and bronchitis/pneumonia. She spent her first Halloween in Rainbow.


Caelyn is doing great now and is making great progress in therapy!

More Testing...

That first hospitalization we ended up being admitted for 2 weeks because the doctors felt while she was there she should see the specialist that she needed to see since we live a distance away from the hospital. Opthomology came and examined her and gave her the all clear, but I was not convinced. She also received PT, OT, and speech everyday while she was in the hospital and they recommended that we continue upon discharge. Therapy has made a world of difference for Caelyn!! At this time, PT expressed concerns that Caelyn's hands were always "fisted". They thought she might have "trigger thumbs" so they wrote up an order form for hands splints for Caelyn. At first I felt bad that she would have to wear them, and I thought "great. another thing for people to stare at. Poo Caelyn." I couldn't have been more wrong! They have helped her hand flexibility tremendously and after 3 short months, she no longer needs them!

She also saw neurology that day, and that is when our perception of Caelyn leading a healthy "normal" life was shattered. They came and saw Caelyn at her bedside and noticed that she was very hypotonic. She was like a wet noodle. She had very little muscle tone. They felt at this time, it would be valuable for them to do an MRI. Her MRI was scheduled for the next afternoon. I was so nervous because they told me that she had to be sedated. So that night they put the IV in. I felt so bad for her! She was not allowed to eat after midnight as her test was scheduled for the next day at noon. They next day came and they did not get her in until close to 5 pm!! Poor Caelyn was so irritable and starving!!

So finally the day came when she was able to come home and just as we were packing up and getting ready to have out Caelyn's neurologist came to discuss the results of her MRI with us. I can still remember the exact conversation like it was yesterday, though at the time I think I was in a daze. She informed us that Caelyn has a small cerebellar volume with some ventricular loss. So basically she has a small brain and a small cerebellum. She then went on to explain that the cerebellum was responsible for balance, coordination, and expressive language. She also said that they are finding more and more things that are connected to the cerebellum every day so it might have more of an impact of Caelyn in the long run than what we realized. I was just trying to process what all of this meant for Caelyn and for us, when she started the conversation again. This time it was to inform us that this is what was causing Caelyn's dysphagia (eating/swallowing difficulty), her muscle tone issues, and most likely Caelyn would never walk. What?? What did she just say?? My sweet little baby might never walk?? I was in complete shock. I couldn't believe it. How was this fair? What a minute...what did she just say? Caelyn may never talk either because the cerebellum is responsible for expressive language. I thanked her and we left. We were silent pretty much the whole way home. How could my sweet Caelyn never be able to walk or talk? My mind was racing...

The Long Road Ahead

Little did we know that that first day at Rainbow Babies hospital would be the beginning of a very long road. Her first appointment was with ENT. They did a scope that day in the office and found that although her airways were smaller than normal and sort of "smushed" that they were normal. They also did a hearing test which Caelyn of course failed. They scheduled her for a barium swallow study the following week.

In the mean time, we met with Caelyn's geneticist. She got the results of Caelyn's blood work which all came back normal. Her geneticists are at a loss. They suggested I follow up with all the specialists to get a full work-up on Caelyn hoping that this might give us some clues at to what is going on. So we left that day and made all of our follow up appointments. We were able to get into cardiology right away. They found out that she had a PFO, which I was told was okay and that they weren't concerned. They want to see her back when she is around 6 for a follow-up to make sure it is closed. We also got an ultrasound of her kidneys which came back normal. Thank God!!

This same week, Caelyn began Help Me Grow. This program has been great. They hooked us up with Early Intervention which has been an amazing thing for Caelyn. We went for her initial assessment and we found out that Caelyn was developmentally delayed in all areas (which we already suspected, but suspecting and confirming are two different things). They made a plan with goals for her to work on.

This brought us up to the time for Caelyn's swallow study. They took her back to radiation and only one of us could go back with her because we also had our 2 year old and she was not allowed back there. In the next 5 minutes, our lives would change forever. They started feeding Caelyn and within 2 minutes they immediately stopped the test. They took me outside and informed that Caelyn was aspirating everything that she was eating and that something had to be done right away. Boy, was I shocked when they said that "something" was Caelyn had to be hospitalized to get an NG tube and Cory and I would have to go through training before she would be released home. This was probably one of the hardest moments for us. We thought we were just going for a test, and now not only were we not going to be able to take Caelyn home with us but now she can no longer eat by mouth and we will have to learn how to tube feed her. This added a big burden to her care. We were a little overwhelmed. I just felt so bad for her. So was so little, innocent, and helpless!

New Beginnings

I have decided to start this blog not only for a friends and family to have a place to follow up on Caelyn's life, but also to share Caelyn's story with the anyone who is interested. Throughout this journey we have had no one to look to for support, but hopefully we will be able to provide that to someone else.

To start from the beginning, my pregnancy was a normal one. Caelyn Paige was born on April 12, 2010 at 10:48am, weighing in at 6lbs 1oz and 19.5 inches long. Right after her birth, she just wasn't breathing correctly. They let me visit with her for a few minutes then took her to the nursery because they said she was being a "lazy breather". This was a very scary time for my husband and I as we were unsure as to what was going on with her. They brought her back to us an hour later and everything seemed to be going great. Caelyn's peditrician came in to talk to us and informed us that Caelyn has a high arched palate and that he would recommend seeing a geneticist because of her facial features he thought she might have some sort of genetic syndrome.


When it was time to leave the hospital we were informed that we had to come back in a few days because Caelyn still had not passed her newborn hearing screen and she also had jaundice that they wanted to recheck. When we went to follow up her jaundice was resolving itself, but she was still unable to pass a hearing screen. That said that sometimes this is caused by fluid in the ears and they wanted to see us back in 2 weeks. We went back two weeks later and she was still unable to pass, so at that time we were referred to an ENT doctor. We went to see the ENT and they could not get her to pass a hearing test either and he informed that they would wait until she was 2 years old to insert ear tubes and I didn't agree with it at all so we decided to seek a second opinion.

During this whole time, Caelyn was having a lot of difficulty in eating. She was a very noisy breather and she was gasping for air when she ate. I took her to see her peditrician and he said that I had a too fast flowing nipple (which wasn't true) and that it was normal. So once again, I went searching for someone who would believe me. We ended up seeing to ENT at WVU. Once again, she failed her hearing screen. This time they decided they wanted to sedate her for an ABR and they would do a scope of her nose at the same time. She was unable to get in for 7 months.

This is when we made our decision to move back to Ohio. I knew that there were doctors there that I knew and I trusted and that would listen to us. As soon as we moved back, we set up an appointment with our girls' peditrician. Her immediately set us up with an appointment with an ENT and geneticist at Rainbow Babies and Childrens Hospital in Cleveland. And that is when our journey truly began...