Just a brief language update: Jacob is really coming along well with his words and phrases, although he is still stumped on some sounds. Sophia is still "Fia" and "s" still degenerates int "sh" for "Fia School Buh-sh" But he's got words for pretty much everything now.
His politeness is improving, at least in words. He still steals toys from his sister, but when she gives him something he says "Thank you much fia" and when sophia sneezes, he says "Bless you Fia." In fact, he says "Thank you much" more often than he says "Thank you". I think his sister has something to do with that - she is very proper in some circumstances. Also, he'll say "sorry fia" in appropriate situations.
We were in the gym of the church playing games while Mommy was preaching, and he was very excited to play soccer. his repeated comment was: "Socca game! Kick-a ball!" I think that counts as a 5 word sentence.
Oh, and he's always concerned with being included. and with ears like a hawk that can be a pain. We're in a store, looking at clothes, and Tricia says, quietly, to me "This might fit him". Instantly he looks at us, points to himself and says "me?" except that words cannot really describe the particular pitch and range of expression that his questions can have. Imagine an animal that can morph from a cat to a mouse and you have an idea of what he sounds like. The "M" part of "me?" starts on a pretty high note, but then he sweeps up into the ultrasound, like "MEEE????" and every time he has a question, he does this crazy emphasized raising... when he wants his sticker book: STICKAAA?? BOOK???? ... when he wants to be included: "MEEE??? TOOO????" ... and when he wants to make sure that he will be in attendance "MEEE??? COME???? TOO????"
I'll try to record some of these questions because the words just don't do it justice.
UPDATE:
We just this minute discovered our son is brilliant:
"Hey Jacob, do you remember the name of the doctor we saw last week?"
"yah" (which is his stock response so we're like yeah right whatever"
"What's his name"
"Dock-ta Bruce!"
Wait, what? We only mentioned his name in passing once or twice, and Dr Bruce only introduced himself to us once, although he did talk directly to jacob. This kid remembers everything, We're doomed.
UPDATE UPDATE: We made a big deal of him saying doctor bruce, so we did a new test:
"What's your uncle's name?"
"Dock-ta Bruce!"
Well I guess we're OK for a little while...
Monday, July 25, 2011
Sunday, July 24, 2011
How many people fit in an assessment room?
Well, we found out...one doctor, three students, two parents, and one small boy. We continue our rounds with the medical system as we search out the possible cause or causes of Jacob's petite (but happy) size.
So far we have stumped an endocrinologist, who did test Jacob for Celiac and had us repeat the test three months later. So, in April we took our little guy and his itty bitty veins back to be poked. Now, I typically let David do this job because I just have a hard time watching my little guy in pain, but I had to suck it up and take him this time. He's a trooper, our boy. Brave as can be. Well, that lead to waiting, hopeful and anxious waiting, and planning. We could handle Celiac --We'd become a wheat free family and work on being prepared for the wheat eating world around us. This was going to be the perfect explanation. You see the use of past tense there, right? While we were in Vancouver for Uncle Todd and Auntie Dea's wedding, our paediatrician called to let us know that Jacob was indeed not celiac. Well shoot. That was going to be our easy answer. Even our doctor was a little disappointed. So check that off the list.
After that we discovered that Jacob is somewhat sensitive to mosquito bites. Okay, more crazy allergic, but you get the point. He gets a bite, say on the forehead. That said forehead swells to Cro-Magnon levels and with the help of gravity over night causes his entire eye lid to swell up along with a little more of the forehead and cheek. This swelling lands us an ER visit where the attending doctor (who we had met the last time we went in April for his throat infection--forgot to mention that!) almost admits us overnight to administer antibiotics...thankfully she calls our ped who tells her that this is a common reaction to the first bites of the season. Whew. No overnight stay for us. However, this reaction takes place with pretty much every bite...the arch of one foot was a lovely size for a couple of days, and Jacob did do a good facial impression of Brian Mulroney morphing into Jay Leno for a few days...throw in some pink eye and the poor kid looks like he's done ten rounds with a boxer.
May was quiet, but June pretty quiet....except when I tried Jacob on peanut butter. Just a taste...he didn't like the texture at all. Spat that nasty stuff out right away. But about an hour later one of his eyes and the membranes around the eye started to swell up. Uh oh. Then about another 45 minutes later he threw up all his food. Note to self...NO MORE PEANUTS.
On to July...busy month for us. We got a call from the Wascana Rehabilitation Center's Children's program stating that we had been referred to the Feeding Team for Assesment....oh, really? That was news to us. Anyway, they wanted to book us for an assessment on Aug 2. Well that sucks...we were supposed to be at the cottage, I had some conversation with the person, telling her our problem, but stating that we would take the appointment for fear of not getting one until much later. About an hour later we got a call with a cancellation time slot for the next day...yup we took it. Jacob met with a dietician, occupational therapist and a speech language pathologist. We chatted about Jacob, then they watched me as i tried valiantly to get him to eat some stuff there (I had to take a variety of things he could and couldn't eat). They watched him through a mirror to see what was going on. Then they played with him and stuck stuff in his mouth to take a look at oral function and such. So far the diagonsis there is that Jacob has some oral motor delay issues (the SLP blew bubbles with him to see how his oral muscles were working), that he has a small mouth which will affect his ability to make certain sounds, and chewing. The OT is encouraging us to work on his swallowing...that somehow he and his mouth aren't making the connection between chewing and then moving the food on for swallowing and that causes some of his choking. Both the OT and SLP noticed that he is hesitant when things come towards his mouth, and that can be the beginning of a gag reflex. So, likely he will need to see the OT again to work on his chewing and swallowing. We are waiting for his full assessment in September with the other Wascana Rehab team we are meeting with ---this is a whole body assessment.
Jacob was tested again for Cystic Fibrosis --working to rule things out. The first test, well, he didn't sweat enough so we had to do it again a week later. This time they got the littlest amount of sweat, so we're hoping they will get enough to test.
And we finally saw a paediatric gastrointerologist (yikes, spelling!) and we didn't have to drive to S'toon either. Dr. Bruce comes down every so often to the General Hospital here in Regina, so we got to benefit from that. We met with the Dr and his three students. Jacob remarkably was not too shy. Went and sat right with Dr. Bruce across the room from David and myself, showed him his Mater stuffy, and basically did what the Doctor asked. He was amazing. Dr. Bruce checked him out and asked a lot questions of us. Manual palpation did not turn up anything. But he did request a couple of tests. First a full blood work up --mainly checking on how things are look and looking at white blood cells and netrophils. He has also asked that Jacob have an upper GI examination --the kind where you have to swallow barium. What he is checking for there is esophageal strictures --some kids have esophaguses that narrow at certain points which causes trouble when swallowing chunkier pieces of food. a Stricture could cause Jacob's preference for very small pieces, and a more liquid diet. So this test will determine if that is an issue, and if it is, a method of expanding that narrow point will be decided on. The final test is a stool elastase test, which seems to boggle the minds of every lab tech we have come across. It is not a common test, but it is an important one. So now Jacob's frozen poop is on its way to Calgary to be tested for markers for Shwachman-Diamond Syndrome. THis is the second most common pancreatic enzyme disfunction disease after CF. It is a recessive genetic disorder that has many and varying symptoms, some of which are small stature, bowel issues and appetite issues. Now he is just being tested for this, we don't have anything more than "it's a possibility" but it is something to go on. I didn't link it here because it IS just a possibility at the moment, so I don't want any one worrying, I do enough of that for everyone!
So right now we are back to waiting. But we are hopeful after the GI appointment, and will be happier once we see the Geneticist (whenever that happens). Jacob is a brave little guy just goes about these appointments happily and without being phased at all. This little guy has seen a lot of the hospital and has met some amazing medical health professionals. We are thankful for their time and their dedication.
That's where we are. We will keep you posted as we know things. We ask that you send us your positive thoughts and prayers. Thanks,
So far we have stumped an endocrinologist, who did test Jacob for Celiac and had us repeat the test three months later. So, in April we took our little guy and his itty bitty veins back to be poked. Now, I typically let David do this job because I just have a hard time watching my little guy in pain, but I had to suck it up and take him this time. He's a trooper, our boy. Brave as can be. Well, that lead to waiting, hopeful and anxious waiting, and planning. We could handle Celiac --We'd become a wheat free family and work on being prepared for the wheat eating world around us. This was going to be the perfect explanation. You see the use of past tense there, right? While we were in Vancouver for Uncle Todd and Auntie Dea's wedding, our paediatrician called to let us know that Jacob was indeed not celiac. Well shoot. That was going to be our easy answer. Even our doctor was a little disappointed. So check that off the list.
After that we discovered that Jacob is somewhat sensitive to mosquito bites. Okay, more crazy allergic, but you get the point. He gets a bite, say on the forehead. That said forehead swells to Cro-Magnon levels and with the help of gravity over night causes his entire eye lid to swell up along with a little more of the forehead and cheek. This swelling lands us an ER visit where the attending doctor (who we had met the last time we went in April for his throat infection--forgot to mention that!) almost admits us overnight to administer antibiotics...thankfully she calls our ped who tells her that this is a common reaction to the first bites of the season. Whew. No overnight stay for us. However, this reaction takes place with pretty much every bite...the arch of one foot was a lovely size for a couple of days, and Jacob did do a good facial impression of Brian Mulroney morphing into Jay Leno for a few days...throw in some pink eye and the poor kid looks like he's done ten rounds with a boxer.
May was quiet, but June pretty quiet....except when I tried Jacob on peanut butter. Just a taste...he didn't like the texture at all. Spat that nasty stuff out right away. But about an hour later one of his eyes and the membranes around the eye started to swell up. Uh oh. Then about another 45 minutes later he threw up all his food. Note to self...NO MORE PEANUTS.
On to July...busy month for us. We got a call from the Wascana Rehabilitation Center's Children's program stating that we had been referred to the Feeding Team for Assesment....oh, really? That was news to us. Anyway, they wanted to book us for an assessment on Aug 2. Well that sucks...we were supposed to be at the cottage, I had some conversation with the person, telling her our problem, but stating that we would take the appointment for fear of not getting one until much later. About an hour later we got a call with a cancellation time slot for the next day...yup we took it. Jacob met with a dietician, occupational therapist and a speech language pathologist. We chatted about Jacob, then they watched me as i tried valiantly to get him to eat some stuff there (I had to take a variety of things he could and couldn't eat). They watched him through a mirror to see what was going on. Then they played with him and stuck stuff in his mouth to take a look at oral function and such. So far the diagonsis there is that Jacob has some oral motor delay issues (the SLP blew bubbles with him to see how his oral muscles were working), that he has a small mouth which will affect his ability to make certain sounds, and chewing. The OT is encouraging us to work on his swallowing...that somehow he and his mouth aren't making the connection between chewing and then moving the food on for swallowing and that causes some of his choking. Both the OT and SLP noticed that he is hesitant when things come towards his mouth, and that can be the beginning of a gag reflex. So, likely he will need to see the OT again to work on his chewing and swallowing. We are waiting for his full assessment in September with the other Wascana Rehab team we are meeting with ---this is a whole body assessment.
Jacob was tested again for Cystic Fibrosis --working to rule things out. The first test, well, he didn't sweat enough so we had to do it again a week later. This time they got the littlest amount of sweat, so we're hoping they will get enough to test.
And we finally saw a paediatric gastrointerologist (yikes, spelling!) and we didn't have to drive to S'toon either. Dr. Bruce comes down every so often to the General Hospital here in Regina, so we got to benefit from that. We met with the Dr and his three students. Jacob remarkably was not too shy. Went and sat right with Dr. Bruce across the room from David and myself, showed him his Mater stuffy, and basically did what the Doctor asked. He was amazing. Dr. Bruce checked him out and asked a lot questions of us. Manual palpation did not turn up anything. But he did request a couple of tests. First a full blood work up --mainly checking on how things are look and looking at white blood cells and netrophils. He has also asked that Jacob have an upper GI examination --the kind where you have to swallow barium. What he is checking for there is esophageal strictures --some kids have esophaguses that narrow at certain points which causes trouble when swallowing chunkier pieces of food. a Stricture could cause Jacob's preference for very small pieces, and a more liquid diet. So this test will determine if that is an issue, and if it is, a method of expanding that narrow point will be decided on. The final test is a stool elastase test, which seems to boggle the minds of every lab tech we have come across. It is not a common test, but it is an important one. So now Jacob's frozen poop is on its way to Calgary to be tested for markers for Shwachman-Diamond Syndrome. THis is the second most common pancreatic enzyme disfunction disease after CF. It is a recessive genetic disorder that has many and varying symptoms, some of which are small stature, bowel issues and appetite issues. Now he is just being tested for this, we don't have anything more than "it's a possibility" but it is something to go on. I didn't link it here because it IS just a possibility at the moment, so I don't want any one worrying, I do enough of that for everyone!
So right now we are back to waiting. But we are hopeful after the GI appointment, and will be happier once we see the Geneticist (whenever that happens). Jacob is a brave little guy just goes about these appointments happily and without being phased at all. This little guy has seen a lot of the hospital and has met some amazing medical health professionals. We are thankful for their time and their dedication.
That's where we are. We will keep you posted as we know things. We ask that you send us your positive thoughts and prayers. Thanks,
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