Imploring the Jinx

Sitting in his big boy bath.

Smiley!

Playing with his new Daddy's built mirror and pull up bar!

Playing with blocks!

At the park!

Loves to go for walks!

10 months!

Swinging for the first time!

Playing with his Pooh Bear!

Grown so much!

Classic.

Can he get any cuter?

Daddy & Cael!

Momma & Cael!

For those of you who may not know, I, Caelin's Mommy, am superstitious. I hesitated to announce Caelin had no "scheduled" doctor's appointments until March in the last blog but let my pride overtake my superstition; therefore, imploring the jinx. That's right, I jinxed it. 

On Thursday, January 3rd Caelin vomited 8 times. We took him to see cardiology to get his blood pressure and blood oxygen level tested. His oxygen level was good but his blood pressure was in the 120s systolic which is way too high for him. We had to put him on Pedialyte for 24 hours, half and half for 24 hours, and then back to full-formula feeds Saturday evening. He had no vomiting Friday, Saturday, Sunday, or Monday. Then Tuesday, January 8th he threw up again and had unusual stools; they imitated the ones he had back in September when he was admitted to the hospital for abnormally high liver enzymes. The vomiting and stools continued on Wednesday and Thursday. Thursday Mommy called GI but no one was available until after 2pm, Caelin's Pediatrician did not come in until 3pm, so that left cardiology. I spoke with the cardiology nurse and she suggested to bring him in right away to be examined and get blood labs drawn- we are so blessed with how amazing this office is and how much they care for Caelin. Again, he had high blood pressure and his liver enzymes were severely elevated. His AST was 720, ALT 427 and GGT 333. With these results, Dr. Stapleton (Cardiologist) contacted Dr. Wilsey (GI) and recommended a liver biopsy since Caelin's enzymes have been a problem for 5 months now. Cael had follow-up labs on Monday which showed significant improvement in his enzyme levels: AST 360, ALT 158, Bili 1.5, GGT 244. Because they lowered so quickly, Dr. Wilsey attributes the elevation to stress from a virus. To check his heart, Caelin had a BNP blood test done which could indicate if he is in heart failure, and if so to what extent. This number is one they like to trend as a single number is not always an accurate representation; however, Caelin's level was 32 which is NORMAL and indicates NO heart failure. AMEN! Anyway, long story (kind of) short, Caelin is NOT getting a liver biopsy. We have our concerns and apprehensions about the procedure even though we really want to know what is going on and we do not want Caelin to go through it until it is necessary. Dr. Wilsey does not feel it is necessary because although his liver is slightly enlarged, congested and descended (as a result of the stressful environment from his abnormal heart), it is functioning normally. Dr. Wilsey reassured us that since Caelin's liver function is normal and with the liver being the only organ that can repair itself, when those cells get damaged from a virus, his heart function, or a medication and the stress causes his liver enzymes to elevate (more in the bloodstream) that it has the ability to mend and start fresh on its own. Caelin will get his labs retested the first week of February and is scheduled to see Dr. Wilsey on February 11th. So no, Caelin will not be free of any appointments in the next couple months to follow... shucks. :/

So before all of this vomiting nonsense, Caelin started a new feeding schedule and rocked it. He was getting breakfast, lunch, and dinner purees with a bottle offered 3 times a day, too. He got up to eating about 4-5 ounces of food a day and drinking an ounce or so from his bottle! Now, we are starting all over and working on condensing his feeds back down. With a cardiac baby, many parts of life are cyclical instead of progressive... at least for a little while. Patience is necessary but easily clouds behind frustration and excitement.

Caelin finally had the evaluation at Early Steps on Tuesday, his 10 month birthday! Initially we were told his heart condition automatically qualified him for the program, so I was brutally honest about his abilities and helped him show off. Afterward, they informed me since his heart was “repaired,” his condition did not qualify him automatically. Well, he was one point away from not qualifying for the services because he was scored almost developmentally "normal/average." We’re not talking “normal/average” for a heart baby who underwent 4 open-heart surgeries, 48 hours on life support, and 50 minutes of CPR, we are talking “normal/average” for ANY HEALTHY baby! Proud cannot even begin to describe how Mommy felt during and after this evaluation. The evaluators kept commenting on how great of an evaluation he was having, how alert and interactive he is, how he does not look like a baby who spent more than half his life in the hospital and how surprised they were with his abilities! They said he has above average fine motor skills for even a NORMAL 10 month old! They watched him pick up a raisin with his pincer grip (not just scooping) and their jaws slightly dropped accompanied with a look of confusion. [Insert pause for celebration- WOO HOO!] His gross motor skills (crawling, getting himself into a sitting position, weight-bearing on his legs) were ranked a 6 out of 10, which isn’t even that bad apparently. Gross motor is where we (Mommy & Daddy) feel he needs the most, and possibly only, catching up. He was ranked the lowest in “Adaptive Skills” and that is per their evaluation, specific to what they saw and asked. This is the only category where he did not score “average” or above. Had they asked about dressing and I told them that he helps us get him dressed by pulling his shirt down over his face and pushing his arms through his shirt (or pulling them out) when dressing or pulling off his socks/hat, he probably would not qualify. We just really want him to get all the help he can with gaining confidence and strengthening his muscles to catch up physically. That being said, he may not be in the program for as long as many children with similar challenging starts to life. Cael really has come a long way… this is one area that is most certainly progressive!

Getting into details on his progression, his list of most recent developments and favorite things to do has expanded. He loves to bring his hands together and bang toys (still not a fan of clapping with just his hands). He loves to use his problem solving skills. For example when he is on a blanket and a toy is on the opposite side of the blanket, out of his reach, he pulls the blanket toward him so the toy moves within reach. It is really the coolest thing watching him learn and problem solve on his own! He continues to bear more weight on his legs and now jumps while holding him. When he is in his jumper, he lets loose and expunges all of his energy until he can’t jump anymore! Now that he is feeling better he is back to rolling over both ways on his own, especially when he is enticed by a toy or book. He is trying so hard to crawl, too. He doesn't have the strength to get up on all fours nor does he have the coordination to get his body into the crawl position but when he is on his tummy, he tries really hard to move to reach desired objects. We are working on this at home and at PT. We’re also working on getting him to pull up himself from laying to sitting and sitting to standing. He likes to brush his teeth, which is now part of our nightly ritual. He reaches for absolutely everything and has an increased confidence and stability when doing so. He also reaches when he wants to be picked up. He’s really into faces & mimicking gestures, expressions & noises. And he said his first word… "Dada." Yes, it is developmentally appropriate for “DADA” to be uttered first because it is easier for those sounds to form, nonetheless still spiked some Mama jealousy. ;) As for the beginning of “Dada,” Cael started off whispering it, which was absolutely adorable. Then Monday he began shouting it. He loves to say it all the time, but we are pretty sure he associates it with Daddy, too. Along with his new sounds, he is experimenting with intonation & sometimes inflection when having a discussion. Of course, Mommy and Daddy’s part of the discussion is in English and Caelin’s is in Caelish. Oh yes, and he whines. Oh boy has he become the king of whining to get what he wants, to let us know when he does not want something, and to express frustration. Luckily, distraction and redirection work for him most of the time... most of the time. 

Well that's pretty much the gist of what has been going on with our big 10 month old! Two more months and he is going to be the "Big 1!" These past 10 months have been the best of our lives and we are so thankful for each and every moment we have with our miraculous son. He is SO AWESOME! Thank you for your love, support, and prayers! We are truly blessed by all of you and by God!

To our friends and family in Michigan, be on the lookout for Caelin and his folks visiting in June! Plans and details are in the midst of getting worked out! :)