Working Those Hands!

My oh my has Gavin made some great improvements with his hands the past few days! Physical therapy came on Tuesday and she worked with Gavin grabbing for toys and bringing them to his mouth, and getting his right arm (which usually hangs out at the side) to come more into the center of his body. 

Well since she has been here, Gavin has been my little super baby! He has been bringing that right arm into the center of his body so much more often, and he was swatting at his toys today on his play mat! Things that he wasn't doing a week ago he has been doing now often throughout the day! I am continually amazed by my little man! 

He is even helping me hold his bottle while I am feeding him. It is just the cutest thing!

I also want to add that Gavin is starting to gain... HEAD CONTROL! When I hold him on my chest now he can actually hold his head up off of me for a few seconds at a time! It is amazing! I didn't think that he would start to gain head control for a while, but he is definitely starting to get the hang of it now!

Well, there's my little update for the day, this is one happy mommy right here!!

Sleep Study

Thursday night was Gavin's sleep study. We left the house a little after 5pm so that we would make it there by 7:30pm. Gavin did the entire trip in his car seat which I am so pleased about. He did not seem to mind the long trip in the car seat one bit.

We actually got to DuPont about a half an hour early, so we waited until 7:30 when they took us back. I put him in the hospital crib and the nurse and I hooked up a pulse ox, a heart rate monitor, two straps around his chest and abdomen, and what seemed like a thousand sensors on his head and face. Then overtop of the sensors they placed a little cap to hold everything in place. Once he was asleep they not only put his regular ram cannula he has with his CPAP, but they also put a carbon dioxide sensor cannula underneath it. He had so many things on him that he just looked silly.

I don't know why they call these things sleep studies, I really think they should be called wake up often throughout the night studies. Gavin had a rough night to say the least. He was up almost every 20-30 minutes fussing, he was uncomfortable, he was having a bit of gas issues at the beginning of the night, he was sweaty, and I couldn't get to his sleeper to take it off of him which made me feel so bad. I think we were both just waiting for 6am to roll around so we could take everything off of him and go home. 

Once 6am did hit and we could take everything off I took his sleeper off so he could cool down before leaving and he was much happier once I did this and all the sensors were removed. I felt so bad for the little guy. 

Because I don't yet feel comfortable making the hour and a half drive to DuPont with just myself and Gavin, Daddy and Ayla drove with us. They were going to stay at the Ronald McDonald House but it was completely full so they got to stay at the Best Western instead. Once I was done packing up we immediately went out to the car and went home. I think during the car ride home Gavin slept longer than any period of time at night. 

So that was our not so fun experience with Gavin's first (and hopefully last) sleep study.

I also wanted to add that Gavin slept very well last night at home. He only woke up one time to get his diaper changed and went right back to sleep. It is such a difference from the night before. Mr. Gavin woke up with his happy face on today! ❤️

Okay, Let's Try This Again....

I wrote out a VERY long post about everything I have forgotten to update on here (because I forgot to post, there's been lots going on) and somehow even after I saved it, my post magically disappeared into Blog-land. So let me try this again..

In February we got the official go ahead to begin weaning Gavin off of his CPAP during the day. We met with his pulmonologist and he said that Gavin's breathing looked great and that he believed Gavin was ready to be weaned off of his respiratory support. We started at 15 minutes twice a day and every 3-4 days increased his time off by 15 minutes. So first few days were 15mins-2xs/day, then 30mins-2xs/day, and so on. Once we got to 2hours twice a day and did this for 3-4 days with no issues, we got the okay to keep him off the CPAP all the time during the day! And after 4 days of him being fine off of the CPAP, we could take the pulse ox off of his foot and only spot check him every once in a while. Gavin did absolutely amazing with his wean, no issues whatsoever! And he is now off all day and is only on the CPAP while he is asleep at night.

Gavin had his first Day Med pamidronate infusion from March 4th-6th! It was much more fun than NICU infusions! We got to spend time with the other OI parents that were in Day Medicine with their little ones, and we even got to spend time with a cute little guy names Isaiah who has the SAME EXACT genetic mutation that Gavin has! (A little background: From what I have heard, there are around 10,000 different mutations that can lead to a person having OI. There are many different "types" of OI and Gavin has type III. But not everyone with type III has the same mutation. When we got the amniocentesis done, our results said that only 2 other people had ever been diagnosed with his specific mutation. Well, as it turns out there was another little boy born around the time that we got our amnio results that had the same EXACT mutation. So that means that Gavin and Isaiah represent half of the known cases of their mutation. And they are about 4 months apart in age. AND they live about an hour from us. CRAZY, right?!?) Gavin's pam infusion went great! The nurse got Gavin's IV in on the first try and it worked for all three days of the infusion. A lot of times children with OI have trouble getting IVs in and working because of their anatomy, and even if you get it in the first day it isn't guaranteed to work for the entire time you need it. So many children get a port placed into their chest to make getting infusions and blood draws easier. This is something we are considering getting for Gavin, but it depends on how easily the IV continues to work. 

Bottle feeding has been a bit of a slow process, but progress is being made. He was for the longest time only drinking about a half of an ounce, but the last 4 days or so he has been averaging an ounce with every bottle. It may not seem like much, but because Gavin has OI, his total amount per bottle is 98mL's, or a little over 3oz. We are hoping that soon Gavin will be taking enough by bottle that we can get rid of the NG tube all together! Speaking of the NG tube, Gavin has discovered his face and therefore his tube as well. And he has become a pro at sneakily pulling his NG tube out the minute I walk away! Daddy and I have become experts at putting the NG tube back in because of all the practice he has given us!


Gavin is transitioned from his car bed to an actual car seat! We waited until the physical therapist was here to help us, but we put him in it and he was so comfortable he fell asleep within minutes! His heart rate, breathing rate, and oxygen levels all stayed perfect while he was in there, so daddy and I decided it was okay to switch, and he has been doing great in the car seat ever since!!

A few other fun things: Gavin is smiling and cooing, he is now switched to cloth diapers now that I feel comfortable moving him around, and big sister Ayla loves her little brother to pieces!

Now for an update on Ayla: She is now 2.5 years old and this is SUCH a fun age! She is speaking in sentences now, she is able to express to us how she is feeling, can describe objects to us, and is saying new words all the time! It's just an amazing thing as a parent to watch your child flourish! I LOVE it! She is so active and loves to play, and she can't wait until it gets warm enough to go outside! She loves everything Disney (of course including the new movie Frozen) and she loves to sing and song from any Disney movie. She has decided that she no longer needs to sleep, which leads to one tired mommy, but I just can't get enough of her!

So tomorrow night we are heading to DuPont to get a sleep study done for Gavin. I am hoping that the sleep study will show only good things and that we will get the okay to wean him off the CPAP at night!

Bottle Feeding!!

IT'S OFFICIAL! 

Gavin has taken his first sips from a bottle! He took his first drink from a bottle on Wednesday and with his first bottle he drank about 3/4 of an ounce of milk! YAY GAVIN!

Started with 3oz!

Every time I have consistently given him a bottle he has done really well, drinking between a half an ounce and an ounce of milk. His 2pm bottle he drank an ounce and a half! and with 6pm bottle he drank another ounce before falling asleep! He is doing so great with his bottle feeding! 

Hopefully soon he will be completely off of the NG tube and getting all of his feeds by bottle! <3

Two Months Old!

Oh my goodness time sure is flying by! Gavin entered our world two months ago today! I cannot believe that he is getting so big already!

We started off today by reading an article in our local newspaper (the Reading Eagle) written about our handsome little guy! We were interviewed about a week ago and they wrote an article about our amazing little guy. It was a very well written article! 

Then we went to get Gavin a temporary hearing aid! He got his BAHA (Bone Anchored Hearing Aid) on a soft band. He tends to wiggle it off of where it needs to be at times but I have to tell you all, he smiled AT me for the first time today! He has smiled in his sleep before but has never looked at me and truly smiled! And not only did he smile once when I talked to him, but a second time right after that when I spoke again! I am so glad his hearing aid seems to be working!

And lastly, big sister Ayla wanted to hold Gavin on her lap today by herself so we let her do so. She was so incredibly happy to be able to hold him all by herself! 

So after an eventful morning and afternoon, it is time for us to snuggle up and relax for the rest of the night! I hope everyone is having as great of a day as we are!! 

The Adorable Big Sister!

I know a lot of the time I talk about Gavin and all of the appointments and daily events pertaining to him. But this post is about my absolutely wonderful 2.5 year old daughter Ayla Quinn.

My beautiful little burst of energy of a daughter is the sweetest big sister. She know that she has to be extra gentle with Gavin and uses her soft hands all the time when she is around him. She gives him kisses as often as she can and she loves to "boop" him on the nose. She talks to him and tells him she loves him every day.

But she is so much more than a big sister. She is an incredibly bright little girl. She can finish 24 piece puzzles in less than five minutes. She says words to me that I didn't even think she knew what they meant or how to say them.She thinks critically about problems and can figure out solve them. She knows her colors and can count to 20, even though once she gets to 13 they all sound very similar. She knows and can say her full name. And she has been fully potty trained since before her second birthday.

She loves to play with her toys, of which she has way too many. She loves playing with characters specifically and will make them have entire conversations to one another and sometimes daddy or I will be involved in the dialogue. She can ride a trike and a scooter and is quite the little daredevil. She jumps off of anything and everything she can and is currently learning how to do a cartwheel (which looks more like a forward roll at this point). She tells me that she wants to learn how to do ballet and has an awesome aunt that is a dance teacher so she will be learning soon enough! 

She is one of the most loving children ever. She is constantly giving me kisses and telling me she loves me. If I leave for a short period of time she tells me she missed me as soon as I get back. We snuggle every day and I wouldn't trade that time for anything in the world. 

I guess I just wanted to let everyone know that Gavin is not the only light of my life. My daughter is what gave me my purpose in life, and that was to be a mother. She taught me so much about what love really is and I thank God every day for bringing her to me. 

Eight Week Checkup

Let's begin our story at 7am yesterday morning. I was planning out how I was going to have Gavin and Ayla ready and in the car by 8am so we could be at Gavin's checkup on time when all of the sudden Gavin decided it was time to have an explosive diaper. Fun fun. So my plan quickly changed to giving Gavin a bath because he so desperately needed one and to weight him myself for ease. So my handsome little guy got bathed and weighed. He is now up to 8lb 11.6oz! Even though we had a slight change of plans we still managed to get out the door and in the car by 8am (yay!). 

Both of the children behaved very
well on the car ride to the doctors office which was wonderful! We had to go to a farther away office than we normally do because the synagis shot was located at this specific office. But they did great for the entire ride! 


During Gavin's appointment he had his normal body check and then had to get 4 vaccines besides the synagis. One was an oral vaccine which we gave to him via NG tube and three were shots meaning he got four shots total. He did not enjoy that part of the appointment but as soon as the shots were over he was back to his normal happy self. Gavin does have a clogged tear duct, which we knew because

his left eye does get goopy at times. His doctor said to try to massage the clog out so hopefully that will work! 

After we got home, Daddy got to have some wonderful snuggle time with Gavin before he went to work as I got my snuggle time with my lovely Ayla. Then later on I got to have my close snuggles with Gavin. He was so happy to be in my arms and I think he even gave me a tiny bit of a smile (along with some funny faces too). He must have been super comfortable skin to skin because he eventually just snuggled up and fell asleep. 

So overall our day went very well! Gavin was a trooper through his doctor's appointment and big sister Ayla was so incredibly patient and week behaved as well! I just love my little kiddos!!