Daddy bought Evan a pool so he can enjoy splashing around like he does in the bath. He loved it! And daddy warmed up the water so it was so nice and he had a bunch of new toys to play with as well. We have much more video than pictures of the first pool extravaganza but I’m sure you can imagine all the fun that was had with just these couple pics.
Today I took Evan and his cousin Xander to Binder Park Zoo. We met up with some friends and hung out with the animals all afternoon – while also trying to keep cool. You can tell summer is here for sure!
This weekend was the first sign that Evan was feeling better. He has been battling some virus for a while and it left him with a pretty nasty cough and a lot of congestion. Monday we scheduled a cardiologist appointment just because we like to check in with them when we don’t feel like we are getting anywhere with our pediatrician. Of course, the appointment was made before he started sounding and feeling better so by the time the appointment came around we didn’t need to talk about it. Dr. Dommer said everything sounded great and adjusted some meds. We won’t be back until his 1 yr checkup so that is great. We also talked to nutrition and they told us to cut his calories by 10%. I don’t know why this is – does it have anything to do with growing too fast before his next surgery? Or is it some stepping stone to help him get an appetite and foster further developments with his eating therapy? I think the latter. But we were having problems with a leaky button and the peds surgery people told us that really the only way to make it tighter is to take the button out, wait anywhere from 20-60 minutes while the hole starts to heal (and it does close quickly – the body is amazing!) and put it back in before it closes too much but just enough to get a tighter seal. This was clearly a job for daddy and after trying twice, we managed to have a much less leaky belly and a much more comfortable baby.
Evan is coming up on his 6 month anniversary of having his G-tube. Who would have known he would go from “failure to thrive” to cutting calories 6 months later! As much as I hate it, I love that it has refreshed his life.
Evan had so much fun at the park yesterday so I took him to one close to the house today. We had the whole swing set to ourselves but we were still unsure of everything. Later we pulled out a blanket and sat in the shade to just play and chill out.
Today Evan went to the park with to meet up with his friends Kathleen and Natalie. The park was a lot of fun and he really enjoyed being on the swing, but he had a very tight hold of it the entire time. The park was pretty busy but one of the best parts was people watching! Later, Evan’s pal Caleb showed up and we played in the grass area away from everyone else. The girls had a lot of fun chasing a big ball. At the end of the day, the moms met up with the dads and we all ate at Main Street, right next to an obnoxious group of little league kids. Not as obnoxious as the parents who were ignoring everything tho.
What is a cute baby to do on a warm sunny day? Go play outside! Throw on your favorite onesie so your chubby legs can be freeeeee! Evan played with a bunch of toys, including some OT brushes. Later the fun moved inside.
Have you seen the show on PBS called Peep and the Big Wide World? It’s a cute cartoon about a duck, bird, and chicken that’s narrated by Joan Cusak. Thank you to cousins Jacob and Morgan for introducing us to the show. Evan loves the theme song and whenever it’s on he stops whatever he’s doing to watch and listen. It is definitely better than the Mickey Mouse Clubhouse “hotdog” song. 😉
This week he’s started to do a little dancing to the music, take a look…
I can’t believe it has been another month since the last post. I wish I could just upload stuff directly from my brain and then making a post would be a lot easier. Is there an app for that?
I also can’t believe that we have a 10 month old baby. No more single digits. It is weird that he is growing up so fast – or just that there are so many changes in that first year of life. It doesn’t seem like time has really flown for me. I look back on things and look at some friends who are expecting and man I do not envy them or want to be in their position again. I would not want to go back to that pre-Hemi Fontan for anything. Really, anytime before March was a real bummer. So glad we are finally being able to enjoy some quality Evan time.
We started physical therapy (PT) once a week. His evaluation was a little rough but after that he has seemed to enjoy going. Much better than going to occupational therapy (OT). Learning to eat again is going to be a real struggle. We are told often by doctors and therapists that it is probably the most frustrating thing for parents. What kids don’t want to eat, you know? How could you not want to eat?
Evan has cut more teeth so now he has at least 6, 2 on bottom and 4 on top – all led by 2 big toofers in the front. I used to call him Tow Mater (from Cars) because one came in a little later than the other. (I don’t know who that guy in the pic is but that is a handsome Mater) We haven’t seen him chewing on his hands and drooling so much so hopefully teething will calm down a bit. He was still refluxing quite a bit but even that has calmed down some too. For now we have moved onto another problem – allergies. Very bad seasonal allergies. Neither mom nor dad have them but poor little baby has them very bad. I don’t even want to take him for a walk they are so bad. Even being outside (while taking medication) his eyes start to water in less than 5 minutes and the nose just starts running. All this has led to a pretty bad wet cough and a pretty rough nights sleep. No more keeping the windows open at night, that is for sure.
We had to go in for a sedated echo at the end of April. Evan is at the age and we go to the doctor infrequently enough that we need to keep his squirmy self calm and still. It is a process to get the IV in and everything. Since he is under 1 they gave him Fentanyl (for pain), Ativan (for anxiety), and Ketamine (for sedation). Once he is over 1 they will be able to administer Propofol (stuff that killed Michael Jackson). They say it works very well but he is just too young. I don’t understand the age limit thing myself; I would figure it would be more important to be a certain size than an age but whatever. The drug combo used worked very well on him. I think they ended up giving him 3 doses of Ketamine because it only acts for 5-10 minutes per dose. I just hate the vacant eyes that you get when he is coming out of sedation. 🙁 Not my favorite at all. Per his cardiologist – his squeeze looks good, his bp looks good, his neo aorta looks good… see you in 2-3 months. Nice job Evan!
Evan has been doing great at becoming more active and doing things for himself. He is much more able to get involved with toys and is really doing great at sitting for extended periods. He loves his jumper and will go crazy in that thing. I think he is getting too heavy for it because he bottoms out the springs with a big thud when he really commits to his jumping (he is 22 lb 6 oz after all!) Recently he learned to wave. He especially loves to wave to himself in the mirror (“Gee that handsome baby sure always waves back to me… he is such a friendly guy…”) Today we did our first successful series of “So Big” and it is great to see him becoming a little boy. But man alive we are in so much trouble once he figures out this whole mobility thing…
The day after Easter, Evan had his first cardiologist appointment in a month. It is abundantly clear that Evan is growing more and more aware of his surroundings. Even from the very beginning he has been an extremely observant child. We heard so many comments in his first week of life that he looked much older, alert, and serious than his peers. During every cardio appointment the nurse takes an EKG. This has not been a problem in the past but this time once she even put the little electrodes on his chest he started crying. I guess it comes with the age tho and we are reaching that point with him. His doctor did not hear any murmur or leaking from his valves so that is great! Evan weighed in at just shy of 20lbs, despite still puking a decent amount, so she upped a couple of his meds due to his increased size. Dr. Dommer wants to have an echo done but due to his past fussiness with them he now has to have a sedated echo. It’s a much bigger production involving the pediatric sedation team and needs to be scheduled for another day for ~ 2 hours. So much for the easier times… I knew these days were coming when everything gets to be much more of a handful.
Evan has begun his weekly OT appointments every Tuesday. We did some decent progress last week and it was awesome to have Nana (Will’s mom) there so she can get in on the at-home therapy practices. We have to do some sensory touching on his face and, if allowed, some gum massage. We should do this frequently, like every diaper change, but make it a fun experience and stop when he wants to. (this is what is being used on him in the picture). Today tho, his therapy appointment was much different. 
Very fussy and irritated. I thought he was tired but his mouth might just be too tender. Evan is starting to get his top teeth so his gums are a little sad (one tooth is a little faster than the other). You would think he would like to chew on things but really he chews on fabric toys or blankets – no plastic. He will gnaw a little on his nuk brush and Angie tried to get him to use a tri-chew, which was moderately successful until it was jammed down the middle of his tongue instead of along the side of his cheek/gum and he started to gag and barf. Our new at-home treatment is to also rub his lips and try to pinch them together a bit to help stimulate the muscles that are used to pull food off of a spoon.
Tomorrow (Wednesday) Evan has a PT evaluation to see if he needs physical therapy. He could probably benefit from a couple sessions as I know his arm/chest muscles aren’t as strong as they could be (surprising to no one). Otherwise Evan has been doing great jumping at home and the other day he even moved his walker a little bit so this shows great improvement in the use of his legs.
Other than that he has been a fantastic little boy. We benefited greatly from some mild weather and took advantage of as many walks as possible. Although he still uses the infant seat in the car, we decided to put the toddler seat on his stroller to see how he would like it – plus it will allow us to always have the stroller set up. He does pretty well by kind of leaning to the side but I think he likes the better view this seat provides him. Even better, we can practice using this seat before the March of Dimes walk on May 5th. If you would like to join us in walking or donating, just give us a holler.
Hope everyone had a fantastic Easter! We had a house full of family and friends and it was wonderful to get together. I am addicted to getting every “Baby’s First ____” that I can find and because I have some mental issue about it being authentic and having to purchase it for the actual occasion, Evan was struttin his stuff in some Easter gear. I couldn’t find bunny ears so I couldn’t 
replicate one of my favorite images of cousin Jacob so I had to settle for some hat I found at Target. Not the same. And Evan was not the one to be messed with to take goofy pictures. It’s like somehow he knew I was already plotting his high school graduation open house…
Since the last post, we had our evaluation with Speech/OT and are going to have treatments once every week. We are going for out PT evaluation in a couple weeks and hopefully he won’t need any of that. It seems like he has been making a lot of progress on his own, which we figured would happen. We have 144 ‘units’ for OT and PT every 12 months with Medicaid. Each session is 4-5 units. After that, we are charged for the co-pay. So, if we don’t need PT, we can get that much more for Speech/OT. Our insurance does not cover Speech but does cover OT so we are going to be seen for OT. I don’t know what the difference is between the two for eating issues, but I think we’ll be fine.
Evan has started to roll over so he is on the cusp of becoming very mobile. Exciting for him, new issues for us, especially for feeding as we need to ensure his tube doesn’t become disconnected, pinched, opened, or pulled. Maybe we’ll have to ask other g-tube families what the did for their mobile tubie baby. Oh! And Evan has been Mr. Fussy Pants lately because he is about to get some top teeth! Or at least one, which is currently right below the surface. Poor little guy, it has to be painful.
Here are some Easter Pics and just basically Evan being cute.
