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!

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 :)

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!

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!

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!