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!

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!!

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!

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!