From oldest to youngest…
Rob. Just his usual cough he gets once a year that lasts for two months annoying the heck out of me :) It’s not a bad cough, just a little “caawf” every 10 seconds. I swear, after a week or two, it just becomes habit. He hates it when I say that ;) Then it suddenly disappears never to be heard from again for the next 12 months.
Me now. Saturday night we watched Life of Pi. Most of the movie is set on a life boat aka seasickness raft. Then that night I dreamt, for what felt like a long time, about being on my own life boat on rough seas and crawling across a rope bridge to a bigger vessel. Sunday morning the alarm went off, I got out of bed, and the room spun. I somehow made it to the closet and got partially dressed before having to run back and lay down before I collapsed and fell into something. Two other times I got up and lost my stomach both times. That was it for me. I was down for the count. I felt really terrible all day. I’ve had vertigo before but this felt not only worse but different. The symptoms have faded a bit each day but I’m still not completely over it. My brain still feels like it’s buzzing but my concentration is coming back. The fatigue comes and goes. My ears aren’t plugged and Benadryl, sudafed, and Nate’s ear drops didn’t do anything to change how I felt. Pretty sure it’s some kind of virus. So I’ve just been taking it easy the last few days. If I don’t, the spinning returns. I think I’ll be completely over it in another day or two.
Next up, Nate. YAY! At Nate’s last endocrinology appointment, Dr. Simard continued her suspicion that Nate may not need GH injections much longer. She’s been his doctor for the last 5 1/2 years and has so much experience and knowledge in her field. After continually tracking his growth, bone age, and other blood components she has noticed that his pituitary gland is producing enough growth hormones on its own that it is right where it should be for his age and genetics. Studies of long-term use are just coming in and there are some significant side effects of long-term use, most significantly being possible blood vessel rupture in the brain. Because of these studies, she is being vigilant in making sure that GH patients aren’t getting more than they possibly need. With him having been on it for so long already before his own body kicked in and taking into account genetics she charts him at being 5’9” or so. That’s perfect. If he hadn’t gone on it, she charted him at less than 5’3” but as low as 4’9”. She ran blood work one more time and wanted to present it to the board at her Endocrinology Case Conference. After a couple of weeks to hear back, we received a letter stating:
“Nathan’s case was presented at our Endocrinology case conference and we have agreed that he should come off growth hormone and follow up in 6 months time. We recommend tapering the GH to one dose every other day for 2 months followed by complete discontinuation.”
WOW. We are blessed. Nate is ecstatic as I’m sure you would expect. We told him that once he’s done (1 more month) we will get him something awesome as recompense for having to put him through endless pokes. He suggested an Xbox or Wii. We’ll see about that…
So with the decrease in both doctor visits and the expensive prescription, we will be able to reduce our yearly HSA savings by over $2000 and also drop to a lower tier of insurance coverage. So between the two we’re looking at a significant reduction of costs. Yippee! Of course, I’m mostly just excited that we don’t have this worry hanging over our heads. Far fewer doctor appointments, far fewer headaches over insurance billing practices, far fewer times seeing Nate’s bare butt (and more) in our faces every night, and far fewer concerns about his overall health and wellbeing. There is a big sigh of relief and big smiles coming from this corner.
PS. He did have strep last week. And he was throwing up last night.
On to Madeleine. She had her kindergarten appointment last week and aced it. She is in the 18th and 21st percentile for height and weight so she is the most normal of the bunch! She’s as healthy as anyone I know. I’m so glad she inherited my mom’s unrelenting immune system! However, she also inherited my mom’s fear of needles. She leaves the room and covers her ears whenever we give Nate his shot or whenever he or Cara needed blood drawn, etc. So needless to say her own shots didn’t go over very well. In fact, I had to talk her out of her hiding place behind the chair in the exam room for a good 3 minutes while gently pulling her arm. Then after she was up on the table, I had to hold her down with my arms and torso while the nurse did her thing. The whole time she screamed bloody murder in my face. It is so hard seeing her child so scared but I also know that it doesn’t really hurt that bad. It’s just disturbing to see them like that. Cara started crying from the commotion. BUT other than that, she has a perfect bill of health.
Now Caroline. Poor Caroline. The girl gets so plugged up. At her fist gastroenterology appointment they checked her for all kinds of health-related issues as to why she has such a hard time completely digesting her food. Nothing came up as being a food sensitivity or anything else so that’s really great. We had her on a routine of laxative but she decided she didn’t want it anymore so flatly refused it and any kind of juice. We cut down her love-of-cheese intake, gave her fiber supplements and probiotics most days and a stronger laxative that she didn’t refuse once or twice a week. I thought all this was helping a bit but when the doc checked, nope. He says that with this age all it takes is one bad poop experience, which I remember her having, and then she will do all her little body can to prevent that from happening again. In her brain that means not pooping if she can at all help it. She will struggle and keep it in her bowels for a week before it forces it’s way out. Of course that’s bad news and makes her even more resistant to pooping. Doing this long enough has turned off her physical urge to push. She no longer has that physical urge, according to the doc. He felt and was worried about her being able to pass such a large amount and thought she might have to have some intervention if it didn’t come out on it’s own the next two days. Sooo, she is on her 2nd round of cleansing. It has sure worked!! After the initial cleansing, we are very slowly easing her off the stool softeners in order to retrain her body the proper function of extricating. I think I get an award for doing this by the way…
Days 1-3:
Enema twice a day, laxative three times a day, osmotic agent (diuretic) 3 times a day
Days 4-10
Enema once a day, laxative once a day, osmotic agent twice a day
Days 11-Followup
Osmotic agent twice a day
Followup-6 months
Stool softeners then weaning off
Like I said, this is her second cleansing. The first time I didn’t really take it too seriously and didn’t push the long-term laxatives as much as I should have. I figured her body would just work itself out and didn’t think of the possibility that she may not even be able to feel herself needing to go until critical mass shuts herself up. That’s why we are starting over. Bad mommy. This time I will try harder to stick to the relentless program and put her (and my) short-term uncomfortable situation aside for the long-term good of her body.
The doctor is still concerned with her weight gain. I thought she was doing better since she finally made it back on the charts. He says she is now gaining at the rate she should be for her age, but she is so far behind and needs to catch up before she turns 3. That’s when growth slows down significantly and she may never be able to make up that loss if she doesn’t get it back by then. So we are continuing to “power pack” her caloric intake.
Now on to her therapy updates. She has graduated the need for occupational therapy. Her behavioral therapist has cut back significantly. That’s really good news! I really have seen a lot of improvements take place with her. I am nothing but impressed with all the experience and knowledge those two therapists bestowed upon me.
As far as her speech therapy goes…S-L-O-W is the word I’d use to describe her progress. I asked the therapist about it and she says she isn’t worried. We still have 6 months until she is too old for their program and thinks she’ll make enough progress by then. Really, though, I almost think she is just saying that to make me not worry. There was no eye contact both times she’s told me this. Also, I haven’t been as impressed with her therapy as the other people. She spends half the time talking about the same nutritional stuff every time. The other half she is playing while trying to get Cara to use correct beginning sounds. That’s great but we do that all the time. She’s not really bringing anything new to the table. Cara can do beginning sounds when we push her but that’s about it. I asked if it is because of habit or if she actually can’t do it very well and the therapist says she thinks it 50/50.
In the last few months she has made progress. She put together her 2nd sentence, “Hep LaLa dnk.” (I helped Madeleine get a drink). She has a couple of new words, “ka” (car), “da ba” (Tinkerbell), “Daria” (Ariel) and today she said “jiu” (juice). It’s the first time she has used the J sound in any kind of context. She uses the H sound more often, too. So, yeah, progress. But, man, I’m still not convinced that she will catch up in 6 months. Of course, I’ve been wrong before many-a-time. So we’ll see.
Man. That was a lot of info. Consider yourself medically updated.
