Happy Things!

 I said I was going to post a list of happy things, so here it is!

 

 

• Job is happy happy all the time.
• For example, he just got two molars on the right side of his gum. He was noticeably sad about it, but it's laughable to compare his response even when sore from teething to that of one of my other kids. Job just has a joy and contentment that faithfully carries him through pain with a sweet disposition.
• He weighs almost 19 pounds, steadily gaining weight! Woo hoo! Many CHD kids struggle greatly with eating and weight gain but Job has exceeded expectations in this (one) department.
• He loves to eat! lots of purees (root vegetables are still his favorite), but at least part of whatever we're eating at every meal. It is so fun to watch him explore new tastes and textures. His face is so expressive and the moment a new food reaches his tastebuds we know if it's a winner or not.
• His most recent audiology assessment went really, really well! He cooperated beautifully and they were able to get more data than they were expecting. His hearing loss (found in April) is resolved back to normal hearing! He still has a good deal of fluid in his ears but it's less viscous. The audiologist we saw told me that she thinks this fluid is because of his oxygen: the constant air forced into his nose makes him more congested and his fluids don't drain as well. We'll keep a close eye on this, but it was thrilling to get this good report!
• His (incredibly thorough, incredibly long) lower extremities ultrasound looked great! His leg clots are fully organized and the necessary collateral veins are getting blood where they need to. Collateral veins are one of the things I continue to be amazed by, perhaps because the illustration of side street roads vs freeways is so evocative for me. His right leg currently measures at the same exact size as his left leg, so we weren't necessarily worried going in to the ultrasound, but it was "fun" to see the collaterals doing their job nonetheless.
• It also appears that they will have left groin access for the cath, according to said ultrasound. Of course, we'll see tomorrow, but the plan is to use the groin rather than liver for access. (To check on his P AVMs particularly, groin access is necessary as the catheter can't get to the right area using the neck. But since Job's right groin access is clotted, we needed to know why his left access was so difficult last time. A clot? Going through the liver is an option but would mean putting a permanent hole in his liver that would bleed a lot and need a permanent plastic plug put in after the cath... So yay for probably not needing to use the liver! This time at least.)
• His speech has absolutely exploded. It's amazing. And so surprising. I filled out several assessments and we did a big speech evaluation in April and May. I kept saying "no" to question after question. He qualified for "intense intervention" therapy. We got on the wait list and then got a regular weekly spot... And then, three days before his first regular appointment, he started talking! He babbles all the time now and has "ba," "pa" "ma" and "ra" sounds. He'll also make a "ha" sound as he waves, which I'm 98% convinced is a "hi"! He likes making noise and is so excited when we mimic him. He sounds so raspy but he's getting loud! We're probably going to every other week or maybe even only monthly speech therapy appointments! The biggest concern will be supporting his core strength and oxygenation so that hr has the stamina to sustain long vocalizations (and eventually long sentences). It amazes me how important oxygen is. I never would have thought about Job's oxygen needs affecting something like the length of a sentence!! But we'll deal with that as we go.
• Job can sign for "more" but it hasn't quite become magical (ie, him using it all the time because he realizes doing so gets him something) but once he starts to use it more often, we can work on additional signs!
• Hematology gave the sign off to switch to once a year check ups (well, if this cath goes well = without clots)!?! I can hardly believe such a thing is possible! We were doing weekly lab draws and phone calls and monthly appointments for so long! So far all of the testing has come back negative, so he's just been really "unlucky" with line provoked clots. The head hematologist is working on creating a vascular map for me so I can have all of his clot information on one piece of paper for future ER visits, etc. It's been confusing to keep track!
• Job's upper body strength is increasing daily. He still had a long way to go, but he pushes off things and raises his arms above his head all the time now! We continue to work on tummy time and his quadraped throughout the day, but the progress is amazing!
• He is quickly becoming so proficient at scooting around on his bottom. He's getting fast!! He's so proud of himself that I can't even be annoyed or worried. I'm giving that burden to his PT! She's shown me a number of exercises to do with him to counter some of the bad habbits/preferences that come with bottom scooting, so we're doing those. We work especially hard on learning to crawl (or at least mimicking crawling) because of the cross lateral development that needs to happen. We're all learning to adjust to a mobile baby! But the big boys have been really good (better than me!) at making sure his surroundings are safe and appropriate.

Ok! That's all I can think of right now. How amazing is that long list!?!