Sunday, April 30, 2006

It's funny reading my general e-mail about James in January (quoted in: Our Family Blog). I ended off saying "Somehow he's a fat little porker, growing and healthy so no use sweating over it!!!" How wrong I was!!! I think in reality I just didn't want to face the truth. Actually I'll defend myself here. The day I wrote that was two days before I took him in for his 13 month appointment which showed he had lost weight. I knew this, my doctor did not, since her last record was from when he was six months, whereas I had been weighing him once a month. But even after his appointment I was not concerned and did not fully see that we had a problem. My doctor was concerned because he wasn't eating and we were having such a battle, so she sent him to a dietician. I went, but not too willingly, more to satisfy my doctors concern. The dietician gave a few pointers and that was the end, she didn't even request a follow-up. Her main point was to back him off of his bottles in order to encourage him to eat. So we did, and hindsight we see this is where the trouble began. Had we had a follow-up appointment she may have better helped us here. He drank less but ate no more. Then he became sick in February with a flu and bad cold, then an ear infection, dragging out for a few weeks. His weight dropped again and we were somewhat concerned, we could see he had lost a fair amount but figured he'd catch up soon enough. Did I mention hindsight??? Prior to his hospitalization I wanted nothing to do with dieticians and the extra help. I didn't want anyone trying to tell us how to do things, and so I tried to pretend it was all no big deal ...eventually he would eat. And I suppose I did truly believe that .. but as each month went by I wondered how much longer before we make progress. I am now so thankful for the Dietician and Occupation Therapist (OT) ... I was certainly wrong about them, this experience has opened my eyes.

Since I last updated James’ situation there's been a few things going on. After I wrote last time he vomitted again the next day and we seen how this really drained him. For a few days he was not as happy and woke more during the nights again, refusing to drink, wanting to be held. But we are thankful that it has now been over a week since he last vomitted. To see him you would never know there is anything wrong with him. He's a new child in many ways, even we don't recognize him at times. Unbelieveable what the proper amount of calories can do to a person. The energy he has now ... he's a boy that's for sure, no more mr. layed-back. He's busy!! He practically runs behind his walker, but refuses to try to walk ... just a ball of nerves then. (OT has suggested this is due to his big belly making him unable to balance properly, that and lack of energy is also likely why he took so long to crawl ... it's a thought, but every child is different, hard to say.) He pushes his dump truck all over the house and today he discovered he can sit on the back and ride it ... much more fun then his firetruck ... until the truck decides to dump it's load ... ouch ... but he just gets on and tries again. He loves to pull the cushion off the pink chair (old arm chair in the dining room), he usually needs assistance to get it off, but has managed to do it himself. Then he climbs up in the chair and jumps and bounces in it like a trampoline, or sits in it and bounces up and down that way. Yup, much more active then he used to be ... full of energy ... it's so wonderful to see!!!

This past week we visited the peditrician. From what she could tell the swelling of his liver and
spleen have come down slightly. We brought a few things forward that we wanted to have looked into. James has never had solid bowel movements, he has always had loose stools, even on weeks that he ate good. He also has had diaper rashes for a long time (I can't remember when, but we believe around when he was put on formula ... I do know it wasn't in his early months). This in itself didn't concern me, until his time in the hospital. His first stay there it cleared up and we didn't even recognize his little bum. Took him home for one day and it was back. Back in the hospital and it's gone just like that. What was different?? Cloth diapers. Okay, so when we got home again we left him in disposables ... rash is back again. What else was different?? Only other thing we can think of - he was on IV. Our research brought us to two conclusions ... and the peditricain came to the same too (maybe I should become a doctor ... sure spend enough time there!!). Milk!! A milk protein allergy, not that he's actually fully allergic to it, but more that he has an intolerance of it, especially considering the amount he drinks. Common symptoms of slow onset milk allergy (or better termed as intolerance): bloated stomach (yup, has had that as long as we can remember), loose stools, (yup, always), poor weight gain (no need for comment here), vomitting (possible, but this has only be recently), skin eruptions (diaper rash, eczema) are more common with rapid onset. I had asked our family doctor about his big belly at his 13 month appointment. She did comment that he had no fat elsewhere, but I think she had hoped the dietician would give a clearer answer, and when I seen the dietician back then I forgot to ask. This issue is being focussed on much more now, as we feel there is a reason for this big belly. So he went for a milk allergy test Thursday. This was just done by blood work. These tests are usually not very accurate, but we had to do blood work anyways so she figured we'd try. The most accurate test is to just change his diet and see if there is change.

The other thing we came across that he was tested for was zinc deficiency. He is getting enough zinc, but it's possible his body doesn't know how to absorb it efficiently. This has similar symptoms. When reading it I wasn't so sure all the symptoms pointed to him, but the doctor pointed this one out as well and wanted him tested for it. Another blood test.

The peditrician also would like him to see a Gastrointestinal (GI) specialist. Although his blood work reveals that metabolically he is getting nutrition from his food, it is possible that this is not truly the case, or that his digestive system is not fuction as it should. This can be seen in the fact that if he does eat, I can sometime find it in his diaper an hour or so later (i.e. raisins from raisin bread, beets, corn). Some people do indeed process things that quickly, but for some this could mean they're not getting all they should out of it. So we're on the list for an appointment with such a specialist, this takes 4-6 months to get in.

In the meantime we work with what we can, and hope that we get things figured out and don't need the appointment. This starts with changing his formula. He is now on a hypo-allergenic formula. Soy milk contains similair proteins as cow milk, so he can't have those either. Another special formula and this one does not taste good. We're going through the battle of getting him to drink it right now by slowly introducing a little more each bottle. Once he's on this we'll be trying it for a month to see if there are any changes. It's hard to work this method since we really do not truly know what else is wrong with him (liver/spleen/lymph nodes wise - which would not be caused by a milk allergy) and are just sort of guessing, but we have to start somewhere. This formula is also covered by the government plan, and now that he's on this plan all prescriptions he gets are fully covered.

Friday the dietician and OT were over. We weighed him three times, but each time the weight came back the same - 20lbs 3oz. He was weighed on Tuesday at the doctors office and was 19lbs 8/9oz (it was 8.88kg, so that's a rough convert). Seems hard to believe he would gain over 1/2lb in a few days. This is wonderful, if it's indeed right. The plan of action right now is that he has to gain his weight back into the 10th precentile (where he was before this began). This means he has to get up to 22lbs+. In order to do this we let him drink as much as he wants. This means he won't eat because he's filling up on liquids, but we continue to go through the motions of eating at meal times in order to teach him age appropriate skills. Once his weight is there, we begin to tackle the eating battle ... and hopefully by then we'll know if the milk change is working.

So in the meantime ... I'm trying to get use to the lack of sleep. Seems the last couple weeks are just loaded with appointments, catching up on stuff and I can't seem to get anything done. This new formula is not a high calorie formula, but is just a regular formula for those with milk protein allergies. This is why they want him to drink as much as possible, because he has to get those calories to grow, and now he has to drink more to get them. This also means, if he doesn't drink well at bedtime, he's going to be up more at night. Eventually my body will adjust, just like we do when we have a newborn ... I just hope eventually comes soon!!!! zzzzzzzzzzzzzzzzzzzzzzzzzzz

Before I go, I want to share our exciting summer holiday news ... we're really looking forward to this one, although right now it all hangs on little James' health. My mom's side of the family is haveing a family reunion this summer for my Grandparents 50th wedding anniversary. Problem being it's in Vernon, B.C. We stated right away that attending was not an option for us. Guess somebody(ies) really loves us a whole lot ... cause we're still going. Thanks Grandpa and Grandma, Mom and Dad, and whoever else helps out!!! We're driving across the country the first week of July. My parents have a 5th wheel camper and we'll be tenting it. This should be interesting. Oh, gotta clarify ... that's me, the kids, my parents, my brother and his wife and daughter. No Rob!!! But not to worry, he's coming too ... he just can't afford that much time off work, so he's flying in for the main dates. James does not do well on long trips ... I want to look forward to this, but I'm a bit worried I'll lose my sanity. Oh well, relax, have fun, make the best of it!!!! We'll be staying for two week to three weeks and then it looks like I'm flying back with the kids. Rob will likely fly out before I go, we'll see when the time comes. So ... for someone who wasn't expecting much for holidays for the next ... oh, say ... 10 years ... this will be fun (I hope ... please kids be good!!!).