With all the flurry of dr activity, we have't offically started HOD yet. Not Even unofficially.
But no surgery looms on the horizon. HUGE sigh of relief...for now. Three feeding related tests later, we don't have any answers as to why he can't get things down. Two possibilities seem to exist.
1. he has a narrowing of esphophagus that they missed
2. his poor motor planning in other areas is affecting his eating.
we will repeat one test in may.
SO...now I've had my second box day as I got an incredible ebay deal on the reading program...do I really need to wait til next school year. Yes, jewell, they need to finish what they have started!
and I'm awaiting my third box day. can you believe someone offered me a FREE Little Hearts. And these precious folks at HOD were kind enough to exchange the one I bought for the next level up for my older son! I'm so excited!
jewell
medical update...and 2nd and 3rd box days!
medical update...and 2nd and 3rd box days!
jewell
mommy, educator of 10
mommy, educator of 10
-
susie in ms
- Posts: 230
- Joined: Sat Feb 16, 2008 2:37 pm
I am excited to hear about your box days!!!
But I am sorry to hear about your lo!!! We have had struggles with Hannah Grace over the last 2 and 3/4 years. But we are praying for healing. I will pray for your lo also!!
But I am sorry to hear about your lo!!! We have had struggles with Hannah Grace over the last 2 and 3/4 years. But we are praying for healing. I will pray for your lo also!!
Susie ~ servant to Christ, wife to Ricky for 25 years, mom to Trisha 22, Kris 21, Joshua 19 and Hannah Grace almost 4.
Loving Little Hands to Heaven!
Loving Little Hands to Heaven!
an eventful Friday...medical update
I don't want to make this a medical board, but some of you have been so kind as to show interest in our one year old w/ microcephaly. He is doing incredibly well in lots of ways, but feeding is still a huge issue. He is 15 months old and can't keep down foods that are thicker than puree. And he doesn't do much of that. Nutren, Jr is keeping him fairly well nourished, but he WANTS to eat.
Other tests didn't show anything, but there was a question raised that they wanted to repeat the swallow study.
For over a week, we were going back and fourth, trying to coordinate a dr appt and swallow study 2 hours away. It finally occured to me that our local speech therapist really liked someone 45 min away, for the modified barium study. So I let the dr. office know that.
On Friday am I received a call that they wanted to repeat Zakariah's swallow study at 1 in the afternoon! We got everyone loaded up and headed out in a bad rain. About the time it let up, in the opposite lane of traffic, we saw them cleaning up what was likely the worst accident I have ever seen. I was so glad I didn't do lunch in the car...the children may have seen more than I ever would want themt o have to see. We, of course prayed for the victims
This was the BEST visit since we moved. We hadn't been to this hospital, or seen this speech therapist before. The whole hospital and team was fantastic...except for their parking! The therapist is ALMOST as good as the one we left.
The swallow study went wonderfully well. The only abnormal thing was the disorganization in his mouth. No new news.
The therapist felt like the reason he wasn't keeping food down or eating much was due to the size of his jaw...extra-small. It looks like it's time to see the Pediatric Dentist at the University..which is over 3 hours away. And what he MAY say is not pretty, but I won't give you the details until I know that is what they need to do. Sometimes ignorance would be bliss.
We also discussed his need for sensory integration therapy, especially w/ the vestibular system (balance/movement). I've been doing this mostly on my own
Then I noticed he was rattle-y, and we discussed the possiblity of "milk study"test. --the one with the radiation.
When I drove home, I discussed this with my oldest daughter. The last time I remember him feeling like that was the last study.
Then we realized that we have always fed him in a nearly upright postion, and we just started letting him have a bottle in the van, and he just started getting ear infections (ear infections can be indicitive of reflux, which we haven't seen any other sign of)/ So I'll have to call the therapist early next week and she what she can make of that.
We then went to the Hands-On museum, which the boys really enjoyed for the hour they were there.
Then after a rather uneventful trip home (with a brief pause for the girls to run in and look out for skirt)
We got home about 8, and I beat dh home. But we still went out a bit after the wee ones were "put away" for the night.
I've wanted to start HOD w/ my three and almost 5 year olds, but I think I'm going to have them wait til Fall. We have so much in the Kumon series we can do til then.
ok, i'm really suppose to be scheduling my olders right now, so I'll be off.
Other tests didn't show anything, but there was a question raised that they wanted to repeat the swallow study.
For over a week, we were going back and fourth, trying to coordinate a dr appt and swallow study 2 hours away. It finally occured to me that our local speech therapist really liked someone 45 min away, for the modified barium study. So I let the dr. office know that.
On Friday am I received a call that they wanted to repeat Zakariah's swallow study at 1 in the afternoon! We got everyone loaded up and headed out in a bad rain. About the time it let up, in the opposite lane of traffic, we saw them cleaning up what was likely the worst accident I have ever seen. I was so glad I didn't do lunch in the car...the children may have seen more than I ever would want themt o have to see. We, of course prayed for the victims
This was the BEST visit since we moved. We hadn't been to this hospital, or seen this speech therapist before. The whole hospital and team was fantastic...except for their parking! The therapist is ALMOST as good as the one we left.
The swallow study went wonderfully well. The only abnormal thing was the disorganization in his mouth. No new news.
The therapist felt like the reason he wasn't keeping food down or eating much was due to the size of his jaw...extra-small. It looks like it's time to see the Pediatric Dentist at the University..which is over 3 hours away. And what he MAY say is not pretty, but I won't give you the details until I know that is what they need to do. Sometimes ignorance would be bliss.
We also discussed his need for sensory integration therapy, especially w/ the vestibular system (balance/movement). I've been doing this mostly on my own
Then I noticed he was rattle-y, and we discussed the possiblity of "milk study"test. --the one with the radiation.
When I drove home, I discussed this with my oldest daughter. The last time I remember him feeling like that was the last study.
Then we realized that we have always fed him in a nearly upright postion, and we just started letting him have a bottle in the van, and he just started getting ear infections (ear infections can be indicitive of reflux, which we haven't seen any other sign of)/ So I'll have to call the therapist early next week and she what she can make of that.
We then went to the Hands-On museum, which the boys really enjoyed for the hour they were there.
Then after a rather uneventful trip home (with a brief pause for the girls to run in and look out for skirt)
We got home about 8, and I beat dh home. But we still went out a bit after the wee ones were "put away" for the night.
I've wanted to start HOD w/ my three and almost 5 year olds, but I think I'm going to have them wait til Fall. We have so much in the Kumon series we can do til then.
ok, i'm really suppose to be scheduling my olders right now, so I'll be off.
jewell
mommy, educator of 10
mommy, educator of 10
pics? how
I've tried for a little while to post a pic of the little guy for you.
I've tried copying the pic.
That didn't work
I clicked on img, then added the number and .jpg
that didn't work
at least not in the preview.
My 16 year old call him
"cutie-pa-tutie"...and I want you to see why!
I've tried copying the pic.
That didn't work
I clicked on img, then added the number and .jpg
that didn't work
at least not in the preview.
My 16 year old call him
"cutie-pa-tutie"...and I want you to see why!
jewell
mommy, educator of 10
mommy, educator of 10
Oh Jewell,
you took me back to when I first brought home My dd! We did all of those things. Swallow study, barium study ect... And we didn't get many answers either.
I'll be praying for you and Gods wisdom for your child. Our answers actually came from me siting down with all of my dd;s med records and praying really hard. God reveled to me a pattern in DD's med history when brought to the attention of the right Dr. cured her continual pneumonia (since age 4 months to 2 and a half years old). I know this is not Your issue But I hoped to encourage you! and to let you know we used both Godly and earthly wisdom for our Girl!
Thank you for the privilege to pray for your boy!
P.S. You need a hosting site to insert photos. One I use is "Photo bucket" upload to that site and then click on IMG line. At photo bucket it auto copies into your clip board and all you have to do is paste it in your post for all to see. Hope that helps
P.P. S. Many Kids in India don't eat "solid" food till they are 3 years old and they do just find <<<<<<huggles>>>>>
Post edited for spelling
you took me back to when I first brought home My dd! We did all of those things. Swallow study, barium study ect... And we didn't get many answers either.
I'll be praying for you and Gods wisdom for your child. Our answers actually came from me siting down with all of my dd;s med records and praying really hard. God reveled to me a pattern in DD's med history when brought to the attention of the right Dr. cured her continual pneumonia (since age 4 months to 2 and a half years old). I know this is not Your issue But I hoped to encourage you! and to let you know we used both Godly and earthly wisdom for our Girl!
Thank you for the privilege to pray for your boy!
P.S. You need a hosting site to insert photos. One I use is "Photo bucket" upload to that site and then click on IMG line. At photo bucket it auto copies into your clip board and all you have to do is paste it in your post for all to see. Hope that helps
P.P. S. Many Kids in India don't eat "solid" food till they are 3 years old and they do just find <<<<<<huggles>>>>>
Post edited for spelling
jewell,
We'll continue to be in prayer for answers with your little one. Sorting through the issues to find the real problem can be overwhelming I'm sure. All 4 of my boys are refluxers, so we have experience with that one.
It sounds like you had a very busy day, but that you're still smiling! The Lord is good to give us what we need when we need it. You're an amazing woman.
Blessings,
Carrie
We'll continue to be in prayer for answers with your little one. Sorting through the issues to find the real problem can be overwhelming I'm sure. All 4 of my boys are refluxers, so we have experience with that one.
It sounds like you had a very busy day, but that you're still smiling! The Lord is good to give us what we need when we need it. You're an amazing woman.
Blessings,
Carrie
-
susie in ms
- Posts: 230
- Joined: Sat Feb 16, 2008 2:37 pm
-
blessedmomof4
- Posts: 1138
- Joined: Tue Oct 02, 2007 4:34 pm
- Location: Las Vegas, Nevada
Thanks for enjoying him with me! that always does a momy's heart good
They are in the process of ordering that other test.
Between his needs, soem needed appts for other children w/ medical challenges and everyday life, and having recently moved, and a Sr graduating in May, I'm feeling this huge, ever-increasing gulf between where I need to be and where I am, and an slip into living under the tyranny of the urgent instead of getting the things done that are REALLY important...
how's that for a run-on sentence????
jewell
They are in the process of ordering that other test.
Between his needs, soem needed appts for other children w/ medical challenges and everyday life, and having recently moved, and a Sr graduating in May, I'm feeling this huge, ever-increasing gulf between where I need to be and where I am, and an slip into living under the tyranny of the urgent instead of getting the things done that are REALLY important...
how's that for a run-on sentence????
jewell
jewell
mommy, educator of 10
mommy, educator of 10
Jewell,
This is my first day on this board, so I don't know what all your ds has been through, but my ds had a similar situation and went through all kinds of tests and dr visits and finally the dr was convinced to do allergy tests before he was 2, and that was the answer. He was allergic to so many things that pretty much every thing he ate caused him to vomit, thus decreasing his desire to eat because the pain in his throat from all the acid.
I hope and pray that you find some answers.
Ashley
This is my first day on this board, so I don't know what all your ds has been through, but my ds had a similar situation and went through all kinds of tests and dr visits and finally the dr was convinced to do allergy tests before he was 2, and that was the answer. He was allergic to so many things that pretty much every thing he ate caused him to vomit, thus decreasing his desire to eat because the pain in his throat from all the acid.
I hope and pray that you find some answers.
Ashley