OK on to Jaime's dr. appointment today. Jaime went to see his pediatrician...actually for a number of reasons...to do our "unofficial" 1 yr. appt, to have formula papers filled out, and to have his ears rechecked from his ear infections.Stats:
Weight-19lbs (he was 18.2 in Cincy, but went up to 19 3wks ago and hasn't gained since)
Height-28 3/4 (Cincy had him at 29...close enough, I suppose, which also means no height growth in over a month)
Head Circ.-18.75 (up 3/4 of an inch since Cincy)
Jaime's dr. said that it's clear that he's burning way more calories that he's taking in, so she suggested putting him back on the O2. She wants us to try it for a few weeks to see if it helps with his growth. I'm a little bummed because I was soooo happy to get rid of that concentrator and go to one large tank a week, now we'll have to go back the loud machine and tubing all over the house...and we'll have to take the little tanks out with us again.
Also, Jaime's back on the Prevacid. We were trialing him off it, but obviously with all of the throwing up he's doing, he still needs it. The strange thing is, all of his vomiting has come from gagging, not reflux, but perhaps in his tummy it's one in the same?!? Anyway, we are on day 4 of Prevacid (I've been giving it to him at night in his formula so he doesn't throw it up) and day 3 of no vomiting!
As for things he's doing...he's still my monkey, but the walking is an issue. Jaime's dr. said today that there is a good possibility that he will have braces for his legs for walking...when we get to that point. She said there are many things he's doing that are like a 15mos. old and many others that are like a 9 mos. old. The drs. all agree that he's definitely more like the size of a 9 mos. old., he will be 13 mos. on the 16th (his adjusted age is 11 mos. old, so he's not too far off).
His communication skills continue to develop more and more every day. He now signs: more and all done. He says: Mom or Mama, Ny-ny (night-night), bus-mostly the "s" sound, ball, buba (bubble), boo-boo...along with all of the others he was saying. He's also responding appropriately to simple yes/no questions even more than the last time I wrote that.
He has 2 more teeth, totaling 6 with, what looks like, 2 more on the way. He has bitten me a few times...and man do those things hurt! Tom calls him a piranha! HA!
Back to today's appointment...Jaime received 2 shots...cried for about a half a second and did awesome. Then, he had to have his H/H checked (nurses-it was 13.4). The dr. did this by a toe prick. Dr. H put gauze and 3 band aids on it in the office, once home I noticed that Jaime's sock was bloody. I took off the bandages, put another gauze pad on, wrapped it with tape...within an hour it was soaked. So, I changed it again. Jared had to go to PSR tonight, they had closing mass, so I went with him while Tom stayed home and held Jaime elevating his foot. Finally, after nearly 6 hrs. of bleeding it stopped...or at least slowed...I wasn't about to take that last bandage off to see if it was still oozing. We half thought about calling the Hemophilia Treatment Center, but weren't up for a trip to Rainbow's. At one point, I put a tourniquet on him to check his veins to start an IV (I have 1 dose of Factor at home that is the right units for Jaime's weight). So glad it didn't come down to that...I can stick Jared like nothing, but having to stick Jaime would be horrifying. Tom would have to hold him down, he'd be hysterical, it wouldn't be pretty! I will be calling the HTC tomorrow to see if they want me to have Factor on hand at home for Jaime and see if they will authorize his home nurses to administer it-we've got to have physician's order for any changes we make in the home.
Notice Jaime's "Boo-boo" toe!
The thing with hemophilia is that each bleed is different. A small bleed can bleed for hours, yet something big can bleed for 5 minutes. We never know which bleed is going to be the "bad one."It's getting late...the Cav's just lost, so it's time for me to head to bed!
Good night, all!
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