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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!!