Jacob got weighed today....he's 22 pounds!! woo hoo! We're happy with the gain.
Excitement ...That's all!
Thursday, February 16, 2012
Saturday, February 04, 2012
So what is up with that Jacob kid?
I have a picture laden update brewing in the background, but I figured it was time to give the low down on what is going on with the youngest Regina Gerhard. We have been busy with appointments with him and getting some answers and no answers both.
We have seen a paediatric gastroenterologist to look at the possibility of something in the digestive system being the culprit of Jacob's smallness. Jacob didn't show all the symptoms for any one disease but showed symptoms of several, so nothing came of that. The doctor arranged for tests for Cystic Fibrosis (again, and negative --although we had to do it twice because Jacob didn't produce enough sweat the first time to test) and Schwarkman Diamond (which is similar to CF, but was negative too --very good to find out). They also arranged for an upper GI test which was done on after not eating for 12 hours and had Jacob drinking a barium drink in order to follow his swallowing on an x-ray. It truly was a cool thing to see but alas did not come up with anything either. All his upper GI physiology was working just fine. So, nothing came of that...other than Jacob is a fantastic test taker --he never balked at taking the barium and laid perfectly still for the X-rays.
Jacob is still seeing Janice and Denise, our fabulous phsyiotherapist and occupational therapist. They are working with us to help strengthen Jacob's hyper mobile (double jointed) joints. This will help him grasp better with his hands...hopefully assisting with the holding of crayons and pulling on of clothes. We are seeing a Speech Pathologist every 6 months as a way to keep an eye on him seeing that he really isn't that far behind where he should be. Truth be told, his language is blooming!
This January we had two important appointments which took us up to Saskatoon. We did the first trip to see the allergist in one day. Jacob was tested for peanuts, dog/cats, mould, and dust....and came up clearly positive for all of them. The last three really were not a surprise, but the quick positive on the peanut was a bit shocking. No one in either of our families has food allergies. So now we have two shiny new Epi-pens that go everywhere with us.
The second appointment was with the geneticist. it took over 18 months to get this appointment, so we didn't let Sophia's round with Strep throat keep us from going. Our friends Tracy and Greg graciously let us stay with them overnight so that we didn't have to do all the travelling in one day. Anyway, we went to see the doctor (and his team) who took more of our medical histories and Dr. Lemere took a good look at Jacob's physical attributes to see if there were any symptoms of any disorders. The long and short of this look over was that the doctor could not see clear symptoms pointing to a disorder. He had some things but not enough to diagnose anything...some things needed to have mental retardation or other factors mental and physical in order to diagnose. The doctor did order a blood test to take a closer look at Jacob's chromosomes and took our (David and my) blood in order to compare them. If Jacob had an extra or missing chromosomes and if either David or I had the same issue then there was a good chance that Jacob would turn out just fine. The only problem with this is that it takes four to six weeks to get the results...so we are still waiting.
But Dr. Lemere was helpful in giving us something positive. He told us that because there is a disconnect between Jacob's bone age and his chronological age, there is growth potential. It would be worse if his bone age matched his age, and he was still small as that would mean that he wouldn't likely grow. So, Jacob will eventually grow --we just don't know when. This means that we don't have to worry as much about the eating issue as he is probably eating enough calories to maintain his current size. So this was helpful for us to know...relieves some of the stress at dinner time.
One of the only down falls of this month was that Jacob has now developed a very strong dislike of having his blood taken. Just after we arrived home from Winnipeg we ended up back at the ER with a high fever that would not decrease. in order to figure out what was causing the fever Jacob had to have blood taken. He did really well for that, mainly because we had been there for six hours and he was tired. But he only cried when the needle went in and settled quickly. Then he had needle pricks for the allergy test. So by the time we got to the lab at the S'toon hospital to do the blood test for the geneticist, he had had enough. Jacob positively freaked out as soon as he saw the blue elastic band they tie around your upper arm. It was heartbreaking. He has been doing so well, with all the tests etc. Now every time he takes off his shirt, he looks at his arm and tells me: "It is gone now. You and me and Daddy, we all had pokes. All three". So he remembers and I don't think he will be forgetting anytime soon.
Anyway, Jacob is happy --loving preschool, gymnastics and skating. He is chatty, engaging and fun. He is also developing a temper, a strong sense of will and a sense of humour. He plays well with Sophia and fights with her too. We are blessed by his presence in our lives, keeping us centred and laughing.
We have seen a paediatric gastroenterologist to look at the possibility of something in the digestive system being the culprit of Jacob's smallness. Jacob didn't show all the symptoms for any one disease but showed symptoms of several, so nothing came of that. The doctor arranged for tests for Cystic Fibrosis (again, and negative --although we had to do it twice because Jacob didn't produce enough sweat the first time to test) and Schwarkman Diamond (which is similar to CF, but was negative too --very good to find out). They also arranged for an upper GI test which was done on after not eating for 12 hours and had Jacob drinking a barium drink in order to follow his swallowing on an x-ray. It truly was a cool thing to see but alas did not come up with anything either. All his upper GI physiology was working just fine. So, nothing came of that...other than Jacob is a fantastic test taker --he never balked at taking the barium and laid perfectly still for the X-rays.
Jacob is still seeing Janice and Denise, our fabulous phsyiotherapist and occupational therapist. They are working with us to help strengthen Jacob's hyper mobile (double jointed) joints. This will help him grasp better with his hands...hopefully assisting with the holding of crayons and pulling on of clothes. We are seeing a Speech Pathologist every 6 months as a way to keep an eye on him seeing that he really isn't that far behind where he should be. Truth be told, his language is blooming!
This January we had two important appointments which took us up to Saskatoon. We did the first trip to see the allergist in one day. Jacob was tested for peanuts, dog/cats, mould, and dust....and came up clearly positive for all of them. The last three really were not a surprise, but the quick positive on the peanut was a bit shocking. No one in either of our families has food allergies. So now we have two shiny new Epi-pens that go everywhere with us.
The second appointment was with the geneticist. it took over 18 months to get this appointment, so we didn't let Sophia's round with Strep throat keep us from going. Our friends Tracy and Greg graciously let us stay with them overnight so that we didn't have to do all the travelling in one day. Anyway, we went to see the doctor (and his team) who took more of our medical histories and Dr. Lemere took a good look at Jacob's physical attributes to see if there were any symptoms of any disorders. The long and short of this look over was that the doctor could not see clear symptoms pointing to a disorder. He had some things but not enough to diagnose anything...some things needed to have mental retardation or other factors mental and physical in order to diagnose. The doctor did order a blood test to take a closer look at Jacob's chromosomes and took our (David and my) blood in order to compare them. If Jacob had an extra or missing chromosomes and if either David or I had the same issue then there was a good chance that Jacob would turn out just fine. The only problem with this is that it takes four to six weeks to get the results...so we are still waiting.
But Dr. Lemere was helpful in giving us something positive. He told us that because there is a disconnect between Jacob's bone age and his chronological age, there is growth potential. It would be worse if his bone age matched his age, and he was still small as that would mean that he wouldn't likely grow. So, Jacob will eventually grow --we just don't know when. This means that we don't have to worry as much about the eating issue as he is probably eating enough calories to maintain his current size. So this was helpful for us to know...relieves some of the stress at dinner time.
One of the only down falls of this month was that Jacob has now developed a very strong dislike of having his blood taken. Just after we arrived home from Winnipeg we ended up back at the ER with a high fever that would not decrease. in order to figure out what was causing the fever Jacob had to have blood taken. He did really well for that, mainly because we had been there for six hours and he was tired. But he only cried when the needle went in and settled quickly. Then he had needle pricks for the allergy test. So by the time we got to the lab at the S'toon hospital to do the blood test for the geneticist, he had had enough. Jacob positively freaked out as soon as he saw the blue elastic band they tie around your upper arm. It was heartbreaking. He has been doing so well, with all the tests etc. Now every time he takes off his shirt, he looks at his arm and tells me: "It is gone now. You and me and Daddy, we all had pokes. All three". So he remembers and I don't think he will be forgetting anytime soon.
Anyway, Jacob is happy --loving preschool, gymnastics and skating. He is chatty, engaging and fun. He is also developing a temper, a strong sense of will and a sense of humour. He plays well with Sophia and fights with her too. We are blessed by his presence in our lives, keeping us centred and laughing.
Subscribe to:
Posts (Atom)