With the support of Leslie, one of our AWESOME Administrators, I have decided to create a place where you all can both vent and share your joys (no matter how big or small) regarding your little ones with developmental delays. We will make this thread a sticky so it will always stay near the top of the first page and will be easy to access. So, please feel free to use this thread continuously to share your ups and downs as a Mom to a little one with delays.
Holly
Developmental Delays Group Owner
Special Education Group Owner
Holly
Developmental Delays Group Owner
Special Education Group Owner
Posted by
on Apr. 5, 2007 at 3:29 PM
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by
on Apr. 5, 2007 at 4:19 PM
This is a great idea.
I guess right now I only have a "low" to post. It's so hard staying motivated with Simon because his progress is SO slow. He is 2 years and 4 months and I've been saying since he was 10 months old: It looks like he's about ready to sit up! WELL, he still isn't doing it. He's stronger and has more endurance, but boy those milestones are poking along. God sure knew I needed to learn patience!
Gretchen
Mom of Simon 2 years old with Pallister-Killian Syndrome
www.freewebs.com/simonpeters
Developmental Delays - Group Administrator
I guess right now I only have a "low" to post. It's so hard staying motivated with Simon because his progress is SO slow. He is 2 years and 4 months and I've been saying since he was 10 months old: It looks like he's about ready to sit up! WELL, he still isn't doing it. He's stronger and has more endurance, but boy those milestones are poking along. God sure knew I needed to learn patience!
Gretchen
Mom of Simon 2 years old with Pallister-Killian Syndrome
www.freewebs.com/simonpeters
Developmental Delays - Group Administrator
by
Leslie
on Apr. 7, 2007 at 9:54 AM
Hi, Gretchen!
I hope and pray that he reaches this milestone soon. I know how hard it is to wait for these things that seem so simple to us, but are such a struggle for our children. Hang in there!
I have both a high and a low to report:
First, the high...
My little Jerry has not had ANY seizures in 12 days!!! YAY!!! Go Jerry! He is so much happier without having them, it is an obvious difference for him. We are seeing so much more eye contact, he is much more alert and attentive, lots more smiles, and even occasionally puckering up for kisses! He has not been seizure free since he was 6 months old. He is 3 and a half now. This is HUGE for him!
Ok, now on to the low...
Jerry has had a continuous fever for about 3 months now. He has been tested for everything, it seems, and they cannot seem to figure out what is causing it. Last week he went to see the Infectious Disease Specialist at Arkansas Children's Hospital. She seems to think it is one of his medications causing this, but there was also blood work done that day and she sent us home and said she would call us with the results of that in a few days. Well, she did call and said that his blood work is abnormal. I immediately started to feel panicky and tearing up, she sounded so serious. She says that they still think it is the medication, but his white blood cell count is too high to ignore, and his platelets are low, so there will need to be further testing to be sure that it is not something else. Wed. morning he is scheduled for a CT scan for his chest and abdomin and a bone scan and more blood work. She says we will get some results on that day, which relieves my mind somewhat. A mom just thinks of all kind of things that it may be....
I don't understand how they can think it is the medication. Medication wouldn't cause an infection, right> And elevated white blood cells mean infection somewhere.
I am so glad that Holly had added this new highs and lows thread here, and I hope you will all take advantage of this, if just get some things off of your chest. I look forward to hearing from all the moms here in the Developmental Delays Group!
Leslie
Developmental Delays Group Administrator
I hope and pray that he reaches this milestone soon. I know how hard it is to wait for these things that seem so simple to us, but are such a struggle for our children. Hang in there!
I have both a high and a low to report:
First, the high...
My little Jerry has not had ANY seizures in 12 days!!! YAY!!! Go Jerry! He is so much happier without having them, it is an obvious difference for him. We are seeing so much more eye contact, he is much more alert and attentive, lots more smiles, and even occasionally puckering up for kisses! He has not been seizure free since he was 6 months old. He is 3 and a half now. This is HUGE for him!
Ok, now on to the low...
Jerry has had a continuous fever for about 3 months now. He has been tested for everything, it seems, and they cannot seem to figure out what is causing it. Last week he went to see the Infectious Disease Specialist at Arkansas Children's Hospital. She seems to think it is one of his medications causing this, but there was also blood work done that day and she sent us home and said she would call us with the results of that in a few days. Well, she did call and said that his blood work is abnormal. I immediately started to feel panicky and tearing up, she sounded so serious. She says that they still think it is the medication, but his white blood cell count is too high to ignore, and his platelets are low, so there will need to be further testing to be sure that it is not something else. Wed. morning he is scheduled for a CT scan for his chest and abdomin and a bone scan and more blood work. She says we will get some results on that day, which relieves my mind somewhat. A mom just thinks of all kind of things that it may be....
I don't understand how they can think it is the medication. Medication wouldn't cause an infection, right> And elevated white blood cells mean infection somewhere.
I am so glad that Holly had added this new highs and lows thread here, and I hope you will all take advantage of this, if just get some things off of your chest. I look forward to hearing from all the moms here in the Developmental Delays Group!
Leslie
Developmental Delays Group Administrator
by
on Apr. 17, 2007 at 10:03 AM
Leslie,
I don't know specifically which meds can cause altered white blood count, but I know that some can, so it could be the meds.
I have a couple of highs to report with Robby.
Eye Doctor-We got him new glasses, and he will wear this pair!!! We really don't know why he refused to wear his last pair, but the best we can figure is they pinched or something else he can't tell us.
Neurologist-Robby's head circumfrence is now a percentile!!!! He's at the 3rd percentile which is really good, considering, he has always been a few good inches below the line on the growth chart!!
by
on Apr. 18, 2007 at 12:01 AM
I posted this in the introduction page but thought I would post here as well.. I recognize some of you moms here from Club Mom...
My name is Susan I live in AZ and haven't been on Club Mom or Cafe Mom on the boards anyway in a while. I have a daughter who is going to be a year old in May. We have had quite the roller coaster ride. At 5 months old I wondered why she wasn't rolling and often wondered why she hated tummy time more that seemed normal for a baby. On Christmas night she was admitted to the hospital with RSV... she was 7 months old, she was not preemie. During the second admission that same week I was asked if she was always that "floppy". I said yes and my peds doctor and I had discussed having her evaluated but wanted to see what happened after the first of the year because she rolled the day after our discussing have her evaluated. She was diagnosed that admission with Hypotonia and bronchiolitis. Reiley's life started to go down hill at 5 months... she got sick several times before her first admission to the hospital. January 15th she was diagnosed as failure to thrive - she was 8 months old and weighed less than she did at 5 months. She saw a Neurologist who wanted her to have an MRI but didn't think we should be too concerned that she had CP. January 27 she was admitted to the hospital again as she stopped bottle and solid feeding altogether for a couple of days and she was becoming very dehydrated. We saw our precious daughter slipping away at 8 months old. She was placed on a NG tube for one week, had her MRI - CLEAR, had been tested for cystic fibrosis, NEGATIVE, blood work - all normal, had a barium swallow and this showed she had difficulty swallowing and had severe GER... we knew at 8 weeks she had reflux, but not to the degree that almost took our daughter away from us. She now eats a very thickened formula, she must drink sitting completely upright and sleeps at a 30 degree angle in a tucker sling. She has greatly improved and goes in for bi-weekly weight checks, she is gaining little by little, she is way under the charts weighing in last check at 15lbs 6.5oz at 11 months old. And since December we have been fighting with Arizona Early Intervention, and DDD to get her the therapies she needs, speech, feeding, OT and PT. She rolls once in a very blue moon. she does not quad or try to crawl at all. She just barely started a couple of days ago to put her legs down (sometimes) when holding her upright and bare weight. She has planter? reflex as well - she constantly curls her feet. She learned to sit while she was in the hospital the end of January first part of February because she had to sit upright. I have gone to the directors of the foundations and as of yesterday she finally got her first PT session, 4 months after my initial call. VERY FRUSTRATING!!! She did start to say dadada about a month ago!!! Anyway, I'm sure their are lots of moms in the same boat as me and wondering if anyone has had the difficulty with their states in getting their therapies for their children. I attached a photo of Reiley in her tucker Sling and a great photo showing her curled toes.
My name is Susan I live in AZ and haven't been on Club Mom or Cafe Mom on the boards anyway in a while. I have a daughter who is going to be a year old in May. We have had quite the roller coaster ride. At 5 months old I wondered why she wasn't rolling and often wondered why she hated tummy time more that seemed normal for a baby. On Christmas night she was admitted to the hospital with RSV... she was 7 months old, she was not preemie. During the second admission that same week I was asked if she was always that "floppy". I said yes and my peds doctor and I had discussed having her evaluated but wanted to see what happened after the first of the year because she rolled the day after our discussing have her evaluated. She was diagnosed that admission with Hypotonia and bronchiolitis. Reiley's life started to go down hill at 5 months... she got sick several times before her first admission to the hospital. January 15th she was diagnosed as failure to thrive - she was 8 months old and weighed less than she did at 5 months. She saw a Neurologist who wanted her to have an MRI but didn't think we should be too concerned that she had CP. January 27 she was admitted to the hospital again as she stopped bottle and solid feeding altogether for a couple of days and she was becoming very dehydrated. We saw our precious daughter slipping away at 8 months old. She was placed on a NG tube for one week, had her MRI - CLEAR, had been tested for cystic fibrosis, NEGATIVE, blood work - all normal, had a barium swallow and this showed she had difficulty swallowing and had severe GER... we knew at 8 weeks she had reflux, but not to the degree that almost took our daughter away from us. She now eats a very thickened formula, she must drink sitting completely upright and sleeps at a 30 degree angle in a tucker sling. She has greatly improved and goes in for bi-weekly weight checks, she is gaining little by little, she is way under the charts weighing in last check at 15lbs 6.5oz at 11 months old. And since December we have been fighting with Arizona Early Intervention, and DDD to get her the therapies she needs, speech, feeding, OT and PT. She rolls once in a very blue moon. she does not quad or try to crawl at all. She just barely started a couple of days ago to put her legs down (sometimes) when holding her upright and bare weight. She has planter? reflex as well - she constantly curls her feet. She learned to sit while she was in the hospital the end of January first part of February because she had to sit upright. I have gone to the directors of the foundations and as of yesterday she finally got her first PT session, 4 months after my initial call. VERY FRUSTRATING!!! She did start to say dadada about a month ago!!! Anyway, I'm sure their are lots of moms in the same boat as me and wondering if anyone has had the difficulty with their states in getting their therapies for their children. I attached a photo of Reiley in her tucker Sling and a great photo showing her curled toes.
by
Leslie
on Apr. 18, 2007 at 6:11 PM
Hi, Susan!
I am so glad that you posted here! It sounds like you have really been through alot already with your little Reiley. I can tell from your post that she is just such a blessing to you. I know that it is so diffucult and frustrating to deal with these doctors sometimes, and you seem to be doing a great job! It is hard to put our trust in someone else when it comes to our little ones. Sometimes it just helps to have someone to talk to, just to vent a little.
I live in Arkansas. We had no trouble at all getting my son into therapy. As a matter of fact, it was I who called around to find him a speech therapist, and when I took him for his evaluation, found out that he also need OT and PT. He has been going for a little over 2 yrs. now. Medicaid covers all of his medical costs, including therapies. If you haven't already, you should really look into getting Medicaid for Reiley. It is really a wonderful program for families who need it!
I am glad that she is finally getting the therapy she needs. I feel sure that this is a great step for her! I hope that you will check back here often to let us know about her progress. Thanks for posting the pics, she is such a little doll! :0)
All my best to you and your daughter;
Leslie
Developmental Delays Group Administrator
I am so glad that you posted here! It sounds like you have really been through alot already with your little Reiley. I can tell from your post that she is just such a blessing to you. I know that it is so diffucult and frustrating to deal with these doctors sometimes, and you seem to be doing a great job! It is hard to put our trust in someone else when it comes to our little ones. Sometimes it just helps to have someone to talk to, just to vent a little.
I live in Arkansas. We had no trouble at all getting my son into therapy. As a matter of fact, it was I who called around to find him a speech therapist, and when I took him for his evaluation, found out that he also need OT and PT. He has been going for a little over 2 yrs. now. Medicaid covers all of his medical costs, including therapies. If you haven't already, you should really look into getting Medicaid for Reiley. It is really a wonderful program for families who need it!
I am glad that she is finally getting the therapy she needs. I feel sure that this is a great step for her! I hope that you will check back here often to let us know about her progress. Thanks for posting the pics, she is such a little doll! :0)
All my best to you and your daughter;
Leslie
Developmental Delays Group Administrator
by
on Apr. 18, 2007 at 7:48 PM
Hi Everyone!
First of all I would like to send prayers out to everyone, no matter the highs or lows. Now, my son Conner is making so much progress. I am very proud of him. He is 3 years and 3 months, and he is still far behind. But he has almost mastered the art of feeding himself with a spoon, he is up to about 25 words, can pull himself up to standing, and take steps with assistance. His walker should be in in a few days. Most of his progress was made in the last few months. I am very grateful. we are also going through a low. He had a muscle biopsy on his leg a litlle over a year ago. Because of where it was taken out of his leg, they must redo the test. He will have another muscle biopsy in 2 weeks. The doctors don't know what is wrong with him and why he has delays. Even thogh he is making progress, they want to make sure Conner's condition does not effect his heart. He took the last biopsy very badly and the only reason we are doing this again is because of his heart. We have a different doctor this time and a differant hospital. Conner is so strong. He is my little hero.
Mindy
First of all I would like to send prayers out to everyone, no matter the highs or lows. Now, my son Conner is making so much progress. I am very proud of him. He is 3 years and 3 months, and he is still far behind. But he has almost mastered the art of feeding himself with a spoon, he is up to about 25 words, can pull himself up to standing, and take steps with assistance. His walker should be in in a few days. Most of his progress was made in the last few months. I am very grateful. we are also going through a low. He had a muscle biopsy on his leg a litlle over a year ago. Because of where it was taken out of his leg, they must redo the test. He will have another muscle biopsy in 2 weeks. The doctors don't know what is wrong with him and why he has delays. Even thogh he is making progress, they want to make sure Conner's condition does not effect his heart. He took the last biopsy very badly and the only reason we are doing this again is because of his heart. We have a different doctor this time and a differant hospital. Conner is so strong. He is my little hero.
Mindy
Gretchen
by
Leslie
on Apr. 19, 2007 at 9:17 AM
Hi, Connernashmom!
It is so good to hear that Conner is making such progress! These are all such exciting milestones he is reaching! Go, Conner!!!
I am sorry to hear that he will have to endure another muscle biopsy, though I agree that it is the best thing to do. Sometimes we have to do things which are scary, and that we don't want to do in order to protect our children. It is encouraging to know that he now has different doctors and a different hospital. I hope that he will get a specific diagnosis soon so that you may know how to progress with his delays.
Thanks for posting the pic, He is sooo cute! I love that smile! I can tell that Connor is a fighter. He has already endured so much. Please know that we are all here for you as you need us. Sometimes it helps you to get through things when you are able to just to vent a little and talk with other moms in similar situations. I hope you will keep us updated on his progress.
My thoughts and prayers are with you and your family;
Hugs to you;
Leslie
Developmental Delays Group Administrator
It is so good to hear that Conner is making such progress! These are all such exciting milestones he is reaching! Go, Conner!!!
I am sorry to hear that he will have to endure another muscle biopsy, though I agree that it is the best thing to do. Sometimes we have to do things which are scary, and that we don't want to do in order to protect our children. It is encouraging to know that he now has different doctors and a different hospital. I hope that he will get a specific diagnosis soon so that you may know how to progress with his delays.
Thanks for posting the pic, He is sooo cute! I love that smile! I can tell that Connor is a fighter. He has already endured so much. Please know that we are all here for you as you need us. Sometimes it helps you to get through things when you are able to just to vent a little and talk with other moms in similar situations. I hope you will keep us updated on his progress.
My thoughts and prayers are with you and your family;
Hugs to you;
Leslie
Developmental Delays Group Administrator
by
on Apr. 19, 2007 at 10:43 AM
It's not the doctors have had difficulity with, her peds doctor I LOVE!!! She has been all over DDD and AZeip and having the same run-a-round I have with them... one person actually told her they couldn't give her any information about my daughter because she didn't have a medical release.... I HAD SIGNED TWO OF THEM!!!! AZeip and DDD have been nothing but horrible to us and I'm not sure why. Again she has had ONE physical Therapy session after my repeated phone calls and emails and badgering. The DS they have sent me two times has no flippin idea what she is doing and makes Reiley scream and cry. I know the PT is going to come next Monday, but after that, we are in the dark as to what is going on... I'm emailing the director of AZeip again today to say wtf? Sorry, I am just SO ANGRY!!! I forgot to mention that when they came to eval her for the 50th time.... they all laughed at me when I said I wanted her crawling by her first birthday which at the time was five weeks away... THEY LAUGHED!!! And I said, well she probably would be close to doing that had you started with her way back when... the system in my opinion SUCKS!!! And I feel so helpless because I'm not a PT, but we are trying to do whatever we can to help her. 
by
on May. 8, 2007 at 5:21 PM
A small update. Simon hasn't turned any major corners, but we're seeing a number of promising things. He has noticed his hands! We catch him staring at them every so often. My OT says that's a biggie. Also, he is just generally more aware of us and his surroundings. He's fingering things more and draws his shirt up into his mouth for mouthing. I started putting bandanas on for that instead of changing his shirt 4 times a day.
Small steps, small steps, but I'm grateful for every one of them!
Gretchen
Mom of Simon 2 years old with Pallister-Killian Syndrome
Simon's website
Developmental Delays - Group Administrator
Small steps, small steps, but I'm grateful for every one of them!
Gretchen
Mom of Simon 2 years old with Pallister-Killian Syndrome
Simon's website
Developmental Delays - Group Administrator
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Delays and Potty Training
- HECinNaptown
on Apr. 5, 2007 at 3:29 PM