Wordless Wednesday

Do-It-Yourself Shopping Cart Seat for Hypotonia! :D

I have been looking high and low for a solution to the grocery cart/restaurant problem for Mason. That problem being, he doesn't have enough head and trunk control yet to ride in the front unsupported (or sit in a high chair at the restaurant), but is quickly outgrowing his infant car seat (which doesn't fit too well in the cart anyway). All the cart covers you can buy are nice but they don't have much support, just a lap belt or maybe simple shoulder straps but nothing substantial enough to handle Mason's low tone right now.  So here's how we worked around the problem...so far, so good!!

I found a soft, stretchy fleece zip-up shirt in a few sizes bigger than Mason wears ($3.50 at Once Upon a Child!!), and cut off the sleeves (so it's not too hot to wear) and use it as a harness to "zip him in" safely against the back of the cart with a cushion or blanket behind him; most of the carts have metal bars/slats as the back of the seat so the shirt can be wrapped around these easily before I put him in it and zip him up. It really holds him well and makes him comfortable! He sure enjoys this view and loves checking things out as he rides around the store! I'm hoping other moms in a similar situation are able to adapt this idea and use it with your little ones too, to simplify things a bit, especially if you have to do your shopping with more than one kiddo :)

For restaurants, if the chairs are slatted like this one, it works as a booster/safety seat too. :) His PT approved and says it's helping strengthen his chest/trunk muscles to sit like this (we do it for playtime throughout the day) and sure enough he is starting to lift his head and chest much more in tummy time now!! :D

UPDATE: it actually works even better turned backwards, zipped up the back...so the top of the zipper doesn't rub his chin.

Carry each other’s burdens, and in this way you will fulfill the law of Christ..." Gal.6:2

Busy-ness and BLESSINGS!

May sure got off to a wild start ... after we got back from the hospital stay with the "UTI" on Easter Sunday (which was later determined to be probably caused by the catheter for the urine sample in the ER and not the initial problem after all), Mason continued to get worse with his fevers, retching, sore button etc. Then I started worrying that the button was infected (not the wrong size like we first thought); back to pediatrician and turns out he did have a G-tube infection, which was probably the issue all along. We got him on antibiotics for that, but after almost a week of them, they weren't helping and we switched to a different one. It did the trick, but really wacked out his poor GI system while he was on it. About the same time as he switched meds, he came down with a flu-type virus with lots of congestion and wheezing so we got a nebulizer for home to help him with that. The doc thinks the asthma may be an ongoing thing for a couple years because of his rough bout of RSV. A few of the other highlights/lowlights of the past few weeks include:

• Mason's baby dedication at church! It was awesome to have both sets of grandparents in town for that special time! :)

(The tough part about that day was that Micah's ears got really infected and his eardrum ruptured and drained for 4 days, ug.) Thank You God that is has healed very well!

 

• The same day, we had the honor of attending the "Medals 4 Mettle" ceremony at Cardinal Glennon - a very generous and thoughtful medical student, Justin, volunteered to run the St. Louis Marathon in honor of Mason, and awarded him the medal he won for finishing (he did the half marathon). The ceremony was to award the courage of kiddos like Mason and what the go through each day...it was very cool! Thanks again Justin!

•  We also had several pediatrician appointments, an endocrinology/thyroid follow-up (yes Mason's TSH is abnormally high which we figured was the reason he was able to gain so much weight on so few calories but the docs had never heard of a baby having this without it being caught on the newborn screen so we are waiting to find out on a re-test if he will be getting treatment for it; we sure hope he can since hypothyroidism can hold back development), a genetics appointment (more on that in a later post), kidney ultrasound, g-tube size check, gastroenterology appointment, nursery follow-up, labwork (actually both boys had some labs because Micah has also been dealing with some yucky GI pain and chronic mouth ulcers but thankfully the tests ruled out the really bad stuff - inflammatory bowel disease; he does have some kind of undefined hypermobility syndrome though and that might be part of the trouble), neurology appointment and PT assessment. Mason's due for shots next week. 

Thankfully they both seem to be on the mend at the moment and we're praying for a long, sick-free stretch! We're looking forward to brighter, warmer days ahead for the summer and some much-needed vacation time!!

 Here's what we were holding onto this month to get us through some of the really rough days with the boys' health...

"BLESSINGS" by Laura Story :) http://www.youtube.com/watch?v=1CSVqHcdhXQ&feature=related

Unplanned 3-Night Hospital Trip but Home in Time for Easter

Well, Mason's oversensitivity after tube surgery just kept getting worse...at least the retching part, and got to the point we realized it couldn't just be ear tubes. He seemed sick, nauseous, a little feverish, and seemed like more than "just reflux" to us (usually with that he is full of hiccups, watery eyes, coughs, etc). It wasn't like that. It was like, green around the gills type, very sick to your stomach retching. He just looked miserable. We wondered if he'd gotten a tummy bug...but this was 9 days out? How could it still be that? Then his G-tube leaked and we changed it to a new one which promptly burst the next day so we had to get a backup from the hospital. When he had a seizure Thursday morning and started crying inconsolably after his afternoon feed Thursday, we knew something was off. We didn't know what because his ears theoretically should be fine...there was no infection at the time of his tubes, and no drainage from them all week. Still it seemed like the nausea/fever/seizure symptoms were red flags that SOMETHING infectious wise was wrong. I called Nursery Follow-Up at the hospital and asked where we should start, since we didn't know what doc should see him or what system might be infected...GI had already offered reflux meds and they weren't helping yet. Probably wasn't ears. Pediatrician routinely just refers us to the hospital. So she talked to his neurologist and said to bring him to ER and they'd run some tests; if no infection was found, their department would increase his seizure meds since he had not had an increase in several months (in fact we're tapering down by not increasing for weight changes).

At the ER, they did more x-rays (poor guy is probably glowing by now) of his chest, GI system and mickey tube placement, blood tests, and urine check. The urine check came back positive for white blood cells. Mason was born with a kidney problem that makes him supposedly more prone to UTIs and was on preventive antibiotics for it but a while back they took him off after good results on a kidney reflux test. The ER doc assumed this was Mason's problem and needed to be admitted for antibiotics until he could better tolerate his feeds. They also had to wait 24-48 hrs to get the results of the more lengthy urine culture to see what grew and how fast. The other docs he saw in the hospital thought it was unlikely that he had a UTI based on the low number of cells in the first sample, but Brian and I were pretty convinced it was the problem based on the low fever and vomiting. The culture did end up growing 3 different strains of bacteria and one in particular they think was causing most of the problems, so they switched his antibiotic for that. He also changed from Pepcid to Prevacid in case reflux was contributing. He got to come home about mid day today (Easter) :D

Happy to be home, enjoying some Easter goodies :D

 He's about the same I guess, maybe a little better. Still retching some, and very crampy from his antibiotics in spite of giving probiotics too. It is manageable though. Just praying it does the trick and his system gets over all this yuck soon. They have ordered a kidney ultrasound for him and he would've gotten it today; however it is Easter so we have to go back for that after our genetics appointment in about a week.

His thyroid test (which I have begged for since he was born but was always denied because "it isn't really possible to have a thyroid problem as a baby if it wasn't caught on the newborn screen) ...also came back abnormal like we have suspected ever since he first couldn't gain weight then started gaining like a crazy man. They are in such disbelief about this high TSH that they want to repeat the test in a month to make sure it is for real/consistent before they treat it. Sigh. Pray for my patience and Mason's health as we play the waiting game again. Pray that he isn't being impacted negatively by this, as a thyroid problem as a baby is nothing to mess around with...by itself it can cause hypotonia, developmental delay, weakness, etc (he has all this but how much is related to his thyroid and how much to his brain malformation is the million dollar question).

In the meantime we are celebrating this very special day and remembering one of my favorite songs ever..."this child can face uncertain days because HE LIVES!"

A Sweetie Pot Likes His Sweet Potatoes :)

Then Jesus said, “Whoever has ears to hear, let them hear.” Mark 4:9

Ear tubes are in, infection is gone, and we feel safe to let Mason try food by mouth again (didn't want to do much of that when he was hurting to swallow since we want the associations he has to be positive with food.) I don't have to do much explanation of his response...you can see for yourself what he thinks of his first oral snackage in a long time...

Thank you all for the prayers for the tube surgery...it went AWESOME! They used the gas, and once he was out, they gave an IV backup which they didn't end up using other than to hydrate him. In addition to the tubes, they were able to get his eye exam (still no glaucoma drops needed at home, yay!) and bloodwork for thyroid (still waiting on those results). He had only a touch of nausea when he woke up and wasn't really upset at all ... just sleepy :) The next day he had some tummy issues that resolved mostly by mid-day.


We know he is hearing a little better at least, since the tubes, because he is WAY hypersensitive right now. He was startling a lot when he woke up from the procedure, and now he just is very defensive about what he touches if he is afraid it will make noise. While he usually likes to kick and play generally, now he holds his legs very close to his body and only reaches out to explore with hands or feet if he feels very safe. He gets VERY upset if someone does it for him. He is also really sensitive to movement and full tummy now, more than usual. So it will take a little adjusting before his senses calm down I think, and adjust to this "new" sense of hearing performing better! Even so he has started laughing over sounds now, not just things that feel nice (which is his usual smile stimulus). He laughs over his "jingly" lion and ball toys, and even smiles after turning to the right (which he doesn't normally do because of his torticollis).

Overall we are encouraged that the tubes should really help him in the long run, and are praying they stay put a long time and don't clog up. We're also praying he tolerates the new foods well since he isn't tolerating much in the way of formula increases (and we are supposed to be working our way to 27.5 oz a day...right now he's at 25 oz and seems to finally be in a holding pattern on his weight..but he's getting long too so this is good news as long as he continues to make steady, slower gains--should make it easier for him to move/build strength now that he is more in the 50th percentile than the 75-90th that he was in a couple months ago).