I've mentioned before that we are not sending Goldie to preschool this year. So, you may be wondering "What does she do?"
I decided to sign her up for a program at a local church called Children's Hour. Goldie goes once a week for 2 hours. My neighbor is her teacher and I'm the permanent helper in her class. It is an all volunteer program that one of my other children attended for two years. No one has any type of education background, let alone any special ed experience. My mom, who has worked in early childhood classrooms as long as I can remember, described it as "developmentally inappropriate." Which is why I love it!
There is no formal instruction or curriculum. No IEPs, no therapists to count how many times she gets something right. Just Goldie and 8 of her peers.
They do have free time with play-do or puzzles, opening songs, weather bear, craft, snack, gym or music, and a bible story.
I expected the first couple of months to be pretty rough. After an awful summer of "Story Time for Children of All Abilities" at the library, I set very low expectations. Sitting still while someone reads to a large group is not one of Goldie's abilities. Yet. I even second guessed my decision to sign her up for a program with only typical children and no adaptations. However, she has been doing great!
My proudest moments are when I see her at snack time, eating and DRINKING from a cup, and holding her hand as she walks down the steps. I had set a goal at the beginning of summer that she would be able to do both of these things by September. Goldie has worked so hard and I love to see the joy on her face when she has her own miniature cup of juice just like all her little friends. Sometimes, after snack is over, she'll sneak over and try to pour herself another drink.
During music, Goldie does all the hand motions that go with the songs or she and I use ASL signs. In the gym she has been able to do all of the activities with no more help than the other children need.
I've been observing how the children relate to each other. There are two boys that come together and I also bring my niece with us. I have yet to see the children really talk to each other and try to form new friendships. The boys stick together and my niece always wants to be near Goldie. Goldie is ready to be friends with anyone, especially the boys. She likes to sit by them and put her hand on their backs. One of them even seems to be looking out for her when she needs help.
The biggest challenge is craft time. The first week wasn't bad, just coloring and some tiny stickers. Then, they moved craft to a room with bins of toys. So, now she wants to ditch the hard fine motor work to go play in the toys. I keep redirecting her back to the craft table and try to give her enough help that it isn't overwhelming to her. At home she has shown a big interest in coloring. I keep a desk with paper, crayons, and markers in the kitchen for her. When they sent home a coloring page I put it on her desk. She sat down on her own and colored each flower yellow. This is the first time she has ever done anything like this! My pile of Goldie's artwork is growing.
At this point, I'm very happy with our decision and the activities we've chosen for Goldie. I think between Speech, OT, Children's Hour and our homeschool field trips, she's got plenty of learning opportunities, but she isn't over scheduled. Which is good for me too!
I've learned that you can't literally live on love, but you can certainly live for it. There is a lot of love in our home with 1 mom, 4 kids, 2 cats and 1 extra chromosome.
Showing posts with label swallowing. Show all posts
Showing posts with label swallowing. Show all posts
Thursday, October 7, 2010
Tuesday, September 7, 2010
Comparing Therapy Service Providers - Part 2
When Goldie was a year old, a pediatric therapy provider moved in 2 miles from our house. Considering we live in a pretty rural area, this is quite a blessing. Otherwise, we would be driving 25 minutes to the nearest outpatient therapy office.
At Goldie's 3 year check up I asked her pediatrician for a prescription for a speech and occupational therapy evaluation. I made an appointment for the evaluations and brought the prescription with us. After the evaluation, it was recommended that Goldie receive two sessions of speech and OT weekly, for thirty minutes each.
Speech
Initially, things got off to a slow start. with therapist B. She was there for two weeks, then left. Goldie worked with her supervisor until therapist A was hired to replace her. The supervisor was wonderful, had heard of Sara Rosenfeld-Johnson, and noted in Goldie's chart that we would like to use her techniques.
The first quality I noticed in "Ms. A" was that she has high expectations for the children she works with. I love this about her, but I've seen other parents scoff at her ideas. Some of the things she works on are: making choices, labeling, indentifying, using two words together, using sentences, and speech sounds. She also, does oral motor work, but I'll get to that later.
Goldie has begun to use a lot of words and phrases. When we talk to her she always repeats back part of what we said. I've heard a lot of new words from her doing this. Goldie can tell us "I want ___". She also understands "if/then" statements. This comes in handy for transitions and when she wants to do something and I need her to do something else. For example "If you wash your hands, then you can have a snack."
Occupational Therapy
Goldie took to her new OT, "Ms. M", right away. Ms. M also has high expectations for Goldie. I have to admit that even I was skeptical at first because of Goldie's low vision. She does much more than simply work on fine motor skills. Goldie does many activities while sitting on a swing or therapy ball to improve her core strength, balance, and eye hand coordination. They also work on dressing by having Goldie remove her shoes and put them on before she leaves.
I have seen an improvement in Goldie's arm, hand and core strength. She is also beginning to dress herself independently and can completely undress herself.
The Best Part!
Both therapists work together on oral motor activities to help Goldie with drinking, tongue and lip movements, etc. This was nearly impossible when Goldie was in the birth to three program and was not an option within her IEP. I wrote more about it here.
More Details
The office has mostly bare walls with an occasional B&W photo of children. It is very neat and clean. Goldie has little to no distractions (most days).
Goldie enjoys being there and trusts her therapists. So do I.
There has not been as much consistency as I would like. Her OT is on maternity leave and they have 2 different OT's covering for her. Then, when I was making our fall appointments the scheduling person switched Goldie to a different speech therapist. I don't know what made me ask if she made the appointments with Ms. A, but I was glad I did. I let her know it was absolutely not acceptable to shuffle my child around and the situation was rectified. It bothered me to find out that it was intentional. They were moving all of her Thursday kids to a new therapist's case load. Now I know to be on my toes when making future appointments.
At Goldie's 3 year check up I asked her pediatrician for a prescription for a speech and occupational therapy evaluation. I made an appointment for the evaluations and brought the prescription with us. After the evaluation, it was recommended that Goldie receive two sessions of speech and OT weekly, for thirty minutes each.
Speech
Initially, things got off to a slow start. with therapist B. She was there for two weeks, then left. Goldie worked with her supervisor until therapist A was hired to replace her. The supervisor was wonderful, had heard of Sara Rosenfeld-Johnson, and noted in Goldie's chart that we would like to use her techniques.
The first quality I noticed in "Ms. A" was that she has high expectations for the children she works with. I love this about her, but I've seen other parents scoff at her ideas. Some of the things she works on are: making choices, labeling, indentifying, using two words together, using sentences, and speech sounds. She also, does oral motor work, but I'll get to that later.
Goldie has begun to use a lot of words and phrases. When we talk to her she always repeats back part of what we said. I've heard a lot of new words from her doing this. Goldie can tell us "I want ___". She also understands "if/then" statements. This comes in handy for transitions and when she wants to do something and I need her to do something else. For example "If you wash your hands, then you can have a snack."
Occupational Therapy
Goldie took to her new OT, "Ms. M", right away. Ms. M also has high expectations for Goldie. I have to admit that even I was skeptical at first because of Goldie's low vision. She does much more than simply work on fine motor skills. Goldie does many activities while sitting on a swing or therapy ball to improve her core strength, balance, and eye hand coordination. They also work on dressing by having Goldie remove her shoes and put them on before she leaves.
I have seen an improvement in Goldie's arm, hand and core strength. She is also beginning to dress herself independently and can completely undress herself.
The Best Part!
Both therapists work together on oral motor activities to help Goldie with drinking, tongue and lip movements, etc. This was nearly impossible when Goldie was in the birth to three program and was not an option within her IEP. I wrote more about it here.
More Details
The office has mostly bare walls with an occasional B&W photo of children. It is very neat and clean. Goldie has little to no distractions (most days).
Goldie enjoys being there and trusts her therapists. So do I.
There has not been as much consistency as I would like. Her OT is on maternity leave and they have 2 different OT's covering for her. Then, when I was making our fall appointments the scheduling person switched Goldie to a different speech therapist. I don't know what made me ask if she made the appointments with Ms. A, but I was glad I did. I let her know it was absolutely not acceptable to shuffle my child around and the situation was rectified. It bothered me to find out that it was intentional. They were moving all of her Thursday kids to a new therapist's case load. Now I know to be on my toes when making future appointments.
Labels:
Drinking,
Early intervention,
IEP,
Language,
Occupational Therapy,
speech,
swallowing
Thursday, September 2, 2010
Helping Goldie Conquer Drinking
Normally, when I write about Goldie's drinking, it's a post brought on by frustration and fear. So much has changed since April when I wrote this. I made another appointment with the ENT. He recommended speech therapy. At that point she had been seen by 5 different speech therapists and 4 occupational therapists. (And had been receiving both on a weekly basis for years) We discussed doing another swallow study and even using a scope to see what was going on. I went home and talked to yet another ST about the value of these tests for Goldie. My husband and I decided we would try one last thing before subjecting Goldie to more tests.
Goldie had started private speech and OT in April, so by the beginning of June she was feeling very at home with them. I explained to them that Goldie's #1 problem was drinking and getting enough fluids. The very next week they began co-treating for 15 minutes each week. Then the following 15 minutes the OT continued working with Goldie on drinking and other oral motor exercises.
Goldie's progress has been nothing short of astounding! Within two weeks we no longer had to thicken anything she drank. They immediately identified which straw cup (of the many we own) worked best for Goldie. After 4 weeks I could put water in her cup. This is huge because she always choked on plain water. Now she is able to drink from a small open cup at mealtimes and can have juice boxes/pouches when we are at picnics. It was so nice to take the kids to the park and just throw a Capri Sun in the bag for each of them. I love the way she holds on to the top of the pouch and sips from the straw. Very cute!
Now, we just have to work on her brother's food "issues". He has a gag reflex that just won't quit and a very sensitive system.
Goldie had started private speech and OT in April, so by the beginning of June she was feeling very at home with them. I explained to them that Goldie's #1 problem was drinking and getting enough fluids. The very next week they began co-treating for 15 minutes each week. Then the following 15 minutes the OT continued working with Goldie on drinking and other oral motor exercises.
Goldie's progress has been nothing short of astounding! Within two weeks we no longer had to thicken anything she drank. They immediately identified which straw cup (of the many we own) worked best for Goldie. After 4 weeks I could put water in her cup. This is huge because she always choked on plain water. Now she is able to drink from a small open cup at mealtimes and can have juice boxes/pouches when we are at picnics. It was so nice to take the kids to the park and just throw a Capri Sun in the bag for each of them. I love the way she holds on to the top of the pouch and sips from the straw. Very cute!
Now, we just have to work on her brother's food "issues". He has a gag reflex that just won't quit and a very sensitive system.
Friday, June 4, 2010
Feeding Blog
While scouring the internet in search of this straw I came across a blog dedicated to pediatric feeding disorders. It's called Food Chaining with Cheri Fraker and Laura Walbert. I spent a lot of time reading through their posts and am very impressed, not only with their knowledge, but their insight and compassion for children. The commonsense approach (mayonnaise is not a food) is just my style. Hopefully, I can find some new ideas that will bring Goldie one step closer to drinking, and enjoying it.
Wednesday, April 21, 2010
Where can I get an accurate swallow study done?
When I wrote that last post I was feeling the dread of dealing with the stomach flu over Easter. Well, that went away around 2 am when Goldie drank a cup of juice and kept it down. My husband decided that would be a good time to give me the whole story about what preceded the puking. He had Goldie with him, visiting the neighbor. She had a little glass and was playing with their water cooler. Filling the glass, trying to drink from it and spilling it all over the place. For most 3 year olds this would be good, clean fun. (Unlike yesterday when she came in covered in tractor grease...) The only problem is that Goldie can't drink thin liquids without choking. Which is what happened. She choked and coughed so hard that she threw up her dinner. It took over an hour to empty her stomach because of her diastasis recti.
WARNING: This next part talks about vomit and you may think its gross.
This brought about another interesting discovery. She didn't chew her dinner. She swallowed her ham whole. The pieces were the same size I had cut them. I don't cut her food teeni tiny either. I don't know if this is a one time thing or not. She has had on OT and an SLP watch her eat. They always tell me how well she chews and moves the food around her mouth. I've given her steak cut in strips and she is able to bite pieces off and chew them. Hmm.
My biggest worry though is that she still can not drink liquids without me adding Thick-It to them. This is why I am glad she is still breastfeeding. It is the one sure way I have of getting fluids in her, even when she's sick. We had a swallow study done last year and were told that everything looked fine and she would outgrow it. Since then I've talked to other parents, whose kids have feeding tubes, and they had the same experience. Only to find later, with a scope, that their child had something physically wrong that prevented them from being able to eat and/or drink.
I know she needs another swallow study done. It annoys me that they pretty much wasted our time last year. I had it done then because I didn't want to be toting the baby along to all these appointments. Any advice on how to get this done right?
And to make things even more fun, I need to have outpatient surgery this summer. I wish I could get it over with sooner, but we booked a vacation. The nerve of us, thinking we could get away for the first time in 5 years. Regardless, I will work very hard at relaxing, despite all the medical loose ends waiting to be tied up.
WARNING: This next part talks about vomit and you may think its gross.
This brought about another interesting discovery. She didn't chew her dinner. She swallowed her ham whole. The pieces were the same size I had cut them. I don't cut her food teeni tiny either. I don't know if this is a one time thing or not. She has had on OT and an SLP watch her eat. They always tell me how well she chews and moves the food around her mouth. I've given her steak cut in strips and she is able to bite pieces off and chew them. Hmm.
My biggest worry though is that she still can not drink liquids without me adding Thick-It to them. This is why I am glad she is still breastfeeding. It is the one sure way I have of getting fluids in her, even when she's sick. We had a swallow study done last year and were told that everything looked fine and she would outgrow it. Since then I've talked to other parents, whose kids have feeding tubes, and they had the same experience. Only to find later, with a scope, that their child had something physically wrong that prevented them from being able to eat and/or drink.
I know she needs another swallow study done. It annoys me that they pretty much wasted our time last year. I had it done then because I didn't want to be toting the baby along to all these appointments. Any advice on how to get this done right?
And to make things even more fun, I need to have outpatient surgery this summer. I wish I could get it over with sooner, but we booked a vacation. The nerve of us, thinking we could get away for the first time in 5 years. Regardless, I will work very hard at relaxing, despite all the medical loose ends waiting to be tied up.
Labels:
extended breastfeeding,
nursing,
surgery,
swallowing,
toddler nursing
Friday, December 4, 2009
The Never Ending Search for Sleep
Its been 3 months since Goldie had her adenoids and tonsils out. Long story short, her sleep is worse than ever.
Eight weeks post op we were supposed to have another sleep study. I politely declined. Goldie seemed to be sleeping better, even though she is still a restless sleeper. I think it may be genetics and not the trisomy 21 kind. Its very common for me to be up with Goldie and hear one, or both, of her sisters talking in their sleep. Goldie has even started saying "No! No!" in her sleep.
Then, right at the eight week mark, I noticed Goldie's breathing was really noisy when putting her to bed. It sounded like she was getting a cold. Her sisters both had colds within a couple days. Even though nothing was draining from Goldie's nose, I used the saline drops and vaporizer trying to clear her congestion. That was 4 weeks ago. Since then we have tried antibiotics, herbal supplements, more drops with suction, and two antihistimines. Her breathing is still noisy and causing her to wake up all night. I called the ped today and she wants us to try a different type of antibiotic and if it hasn't improved by Monday to call back. I told her with the baby due soon, she would be seeing us either way!
I'm not crazy about giving her more antibiotics, but I thought we should try it before we head off to the ENT. And it doesn't help that she drinks just enough to survive. If this drags on until the baby arrives, I can always hope letting her nurse more will be the cure. Any other ideas?
Eight weeks post op we were supposed to have another sleep study. I politely declined. Goldie seemed to be sleeping better, even though she is still a restless sleeper. I think it may be genetics and not the trisomy 21 kind. Its very common for me to be up with Goldie and hear one, or both, of her sisters talking in their sleep. Goldie has even started saying "No! No!" in her sleep.
Then, right at the eight week mark, I noticed Goldie's breathing was really noisy when putting her to bed. It sounded like she was getting a cold. Her sisters both had colds within a couple days. Even though nothing was draining from Goldie's nose, I used the saline drops and vaporizer trying to clear her congestion. That was 4 weeks ago. Since then we have tried antibiotics, herbal supplements, more drops with suction, and two antihistimines. Her breathing is still noisy and causing her to wake up all night. I called the ped today and she wants us to try a different type of antibiotic and if it hasn't improved by Monday to call back. I told her with the baby due soon, she would be seeing us either way!
I'm not crazy about giving her more antibiotics, but I thought we should try it before we head off to the ENT. And it doesn't help that she drinks just enough to survive. If this drags on until the baby arrives, I can always hope letting her nurse more will be the cure. Any other ideas?
Labels:
extended breastfeeding,
Goldie,
nursing,
sleep,
sleep Apnea,
surgery,
swallowing
Sunday, November 22, 2009
What do you do all day?
As part of my baby preparations, I wrote down Goldie's routine for the day. My mom will be taking care of her and I want to make it as easy on both of them as possible. Plus, I can go into labor with a clear mind that Goldie's needs are being met. It may also come in handy if anyone stops by to help out after the baby is born.
I couldn't believe once I started how many little things I do for her. I also learned that while I may feel disorganized, we really do have a routine that we follow everyday. Its flexible, but consistent. It also answers the age old SAHM question, "What do you do all day? Don't you get bored?" I thought I would post just the morning to lunch portion, I don't want to completely bore you. If this doesn't seem like a lot, keep in mind that all this goes on while homeschooling my 2 older kids, making their lunch, etc...
So there you have it, a peak at the day in the life of Goldie!
I also did not intend this post to be about nutrition, supplements, or potty training. But, I realize people may have questions after reading it. I consider all of Goldie's supplements essential for her. She has to have probiotics and fish oil(Children's DHA) to avoid constipation. The fish oil and melatonin work together to help her sleep. We also see a difference in her speech and cognition when she is taking Ginkgo. As for potty traing, we aren't. We have practiced elimination communication since Goldie was 4 months old. Our road to being diaper free is just a little longer than most!
I couldn't believe once I started how many little things I do for her. I also learned that while I may feel disorganized, we really do have a routine that we follow everyday. Its flexible, but consistent. It also answers the age old SAHM question, "What do you do all day? Don't you get bored?" I thought I would post just the morning to lunch portion, I don't want to completely bore you. If this doesn't seem like a lot, keep in mind that all this goes on while homeschooling my 2 older kids, making their lunch, etc...
Goldie’s Schedule
6:30-8:00 Good Morning!
Potty -Right after she wakes up Goldie pees on the potty. She is usually dry in the morning.
Breakfast Goldie likes: - toast w/ raspberry jam or peanut butter
-Waffles w/ maple syrup to dip them in
-banana
-cereal w/ soy milk (feeds herself so use 2 bibs and a placemat)
- NO cheese, milk, or yogurt
Drink - 50/50 juice (white grape or oj) and water = 8 oz w/ 5 tsp Thick-It
- add 4 drops of Vitamin D (only added to morning drink)
Ginkgo - give .50 ml in the morning (not afternoon or evening)
Get dressed, puts her pajamas away in drawer
Playtime - read books, do puzzles, play babies, watch Signing Time, helps unload dishwasher and puts her dishes away.
10:00 Potty time and snack. Encourage Goldie to drink.
Lunch - 1 orange probiotic and ½ tsp Children’s DHA
- both are on door of refrigerator, use medicine syringe for DHA
-Goldie likes: leftovers from dinner, pb&j, fruit, salad, canned pasta, chicken, salty foods, tuna, and soup
Potty
Nap - Goldie is ready for a nap by 1:00.Sometimes sooner if she was up early. She likes to rock in the recliner and listen to her GloWorm (while I sing along). Sometimes we lay on my bed and I sing to her.
Potty - Goldie usually poops after her afternoon nap. Be patient this can take a long time. It’s a good time to read some books.
So there you have it, a peak at the day in the life of Goldie!
I also did not intend this post to be about nutrition, supplements, or potty training. But, I realize people may have questions after reading it. I consider all of Goldie's supplements essential for her. She has to have probiotics and fish oil(Children's DHA) to avoid constipation. The fish oil and melatonin work together to help her sleep. We also see a difference in her speech and cognition when she is taking Ginkgo. As for potty traing, we aren't. We have practiced elimination communication since Goldie was 4 months old. Our road to being diaper free is just a little longer than most!
Labels:
elimination communication,
Goldie,
melatonin,
pregnancy,
sleep,
supplements,
swallowing
Saturday, October 31, 2009
I did it.
I got the H1N1 vaccine yesterday. After many hours of research and debating in my head I decided to just get the shot. My PCP had them and they were mercury free so I went yesterday morning.
Boy, does everyone have an opinion about it too. I can't believe the reasons people were coming up with that I shouldn't get it. Like its a government conspiracy? Seriously?
Right now, it seems like everyone we know has swine flu. The pediatrician (solo practice) up the road was seeing 100 kids a day! I think we may have had it back in August. That was when I had bronchitis and took antibiotics and still coughed for 5 weeks. But, if that wasn't it, then I would really be in trouble if I did get it. Then again, if we did have it, why get a vaccine I don't need?
I know a lot of people say the media is making it out to be worse than it is. Well, after Goldie's surgery in September a woman who lives near us passed away from H1N1 complications (pneumonia). She was only 44. That was when I really started to worry. This was someone we knew. Not someone considered "at risk" or with health complications. I drive by her house everyday and think about her husband and daughters.
I'm also going to see if Goldie's ped has the vaccine available. She barely drinks enough as it is. I hate to think of her getting dehydrated again.
In the meantime, when we are out and about, we'll keep taking baths in hand sanitizer. Then scrubbing again at home. The truth is we did that most of the time anyway. I learned pretty fast that 3 sick kids is no fun. I don't care who thinks I'm crazy as I wipe down the highchair at the restaraunt. Because you know they won't be the ones scrubbing my carpets at 2 am or using a syringe to get fluids into a lethargic 2 year old. And you would be suprised by how dirty the tables are, let alone the highchairs!
Boy, does everyone have an opinion about it too. I can't believe the reasons people were coming up with that I shouldn't get it. Like its a government conspiracy? Seriously?
Right now, it seems like everyone we know has swine flu. The pediatrician (solo practice) up the road was seeing 100 kids a day! I think we may have had it back in August. That was when I had bronchitis and took antibiotics and still coughed for 5 weeks. But, if that wasn't it, then I would really be in trouble if I did get it. Then again, if we did have it, why get a vaccine I don't need?
I know a lot of people say the media is making it out to be worse than it is. Well, after Goldie's surgery in September a woman who lives near us passed away from H1N1 complications (pneumonia). She was only 44. That was when I really started to worry. This was someone we knew. Not someone considered "at risk" or with health complications. I drive by her house everyday and think about her husband and daughters.
I'm also going to see if Goldie's ped has the vaccine available. She barely drinks enough as it is. I hate to think of her getting dehydrated again.
In the meantime, when we are out and about, we'll keep taking baths in hand sanitizer. Then scrubbing again at home. The truth is we did that most of the time anyway. I learned pretty fast that 3 sick kids is no fun. I don't care who thinks I'm crazy as I wipe down the highchair at the restaraunt. Because you know they won't be the ones scrubbing my carpets at 2 am or using a syringe to get fluids into a lethargic 2 year old. And you would be suprised by how dirty the tables are, let alone the highchairs!
Sunday, October 25, 2009
Who Stole the Apple from the Apple Bag?
Goldie!

She snagged this right out of the bag on the counter. I took it back long enough to wash it. I figured it would keep her busy for about 15 seconds and was a little doubtful that she had the jaw strength to bite off a piece. I buy the very crunchiest apples I can find. She, of course, showed me that even the crunchiest apple is no match for her!
This has already proved to be an easy snack to give her on the go. I'm notorious for not remembering to bring snacks when we go out. I blame it all on breastfeeding. I always had food on hand when they were babies and it got me into a bad habit of not packing snacks. Anyway, after we went on a nice, long hayride this week I was able to buy Goldie an apple to eat. How convenient? Too bad I can't do that when her drink runs out! (I've been caught without "Think-It" more than once this week.)
She snagged this right out of the bag on the counter. I took it back long enough to wash it. I figured it would keep her busy for about 15 seconds and was a little doubtful that she had the jaw strength to bite off a piece. I buy the very crunchiest apples I can find. She, of course, showed me that even the crunchiest apple is no match for her!
This has already proved to be an easy snack to give her on the go. I'm notorious for not remembering to bring snacks when we go out. I blame it all on breastfeeding. I always had food on hand when they were babies and it got me into a bad habit of not packing snacks. Anyway, after we went on a nice, long hayride this week I was able to buy Goldie an apple to eat. How convenient? Too bad I can't do that when her drink runs out! (I've been caught without "Think-It" more than once this week.)
Saturday, September 5, 2009
T & A Setback
I'm exhausted but wanted to update on Goldie's recovery. Thursday morning she wouldn't eat or drink and was very tired. After lunch when I tried to take her temp she had a nose bleed, so that sent us straight to the ER. They determined the bleeding was stopped, but she was transported to Children's Hospital for dehydration. After some convincing on my part, they admitted her. She was soooo lethargic I don't know why they even considered sending us home. We stayed until this evening. I was very hesitant to bring her home because she was not drinking reliably. Although, she was eating and running around. She's done a little eating and drinking since we got home. I wasn't able to get her new pain meds because all the pharmacies are closed on Saturday nights. (One of the reasons I wanted to stay until tomorrow am.) I'm ready for bed, but Goldie is still up. Why don't any of these meds make her tired???
Sunday, July 26, 2009
Drinking and Swallowing Update
When we saw the ENT last week I talked to him about the lack of follow-up after Goldie's swallow study and we discussed what recommendations were made. The only suggestion they had was that "Goldie drink in a seated position that provides head and neck support as opposed to sitting on her parent's lap or being allowed to stand with her cup." If the SLP had told us this I would have let her know that Goldie has had many incidents of choking on her drink in her high chair. Even if it did help her to drink safely, I can't limit her to drinking only when we she is in a high chair. She was on the verge of dehydration and not drinking enough at mealtimes to meet her fluid needs.
So, by last Saturday I was fed up. Goldie had only had 4 oz to drink in a 24 hour period. I went to Walgreens and bought some Thick-It. (I chose Thick-It because it only contains two food based ingredients. Some of the other thickeners had preservatives in them.)It took some trial and error to find the right consistency, but we did it. Within 48 hours Goldie went from drinking 4-8 ounces a day to 20!!!! She slacked off a bit after that, but has now been drinking at least 16 ounces a day for the last 4 days. I'd like to see her eventually drink more than this. Her post-op instructions suggest 32 ounces a day. I imagine this varies depending on the size and age of the child.
I really wish I had taken matters into my own hands sooner. Goldie hasn't had any bouts of constipation this week. I did receive a copy of her swallow study in the mail (2 days after speaking to the ENT) with the contact information of the SLP we spoke to. I'll have to call her and let her know what is working for Goldie.
Lately, the insurance benefit statements have been rolling in for all these tests and specialists. I told Hank they should be glad we have insurance (as am I) because if I was writing the checks not everyone would be getting paid. The SLP being one of them. Maybe this is part of what's wrong with our healthcare system. They collect a check wether they do a good job or not. This is the other doctor that wouldn't get a check from me. I wish there was more accountablility.
Monday, July 20, 2009
ENT Appointment, AAI x-ray
Goldie's ENT appointment went really well. He answered most of my questions before I could even ask them. He wants her to stay overnight, so I didn't have to ask for that. We discussed the possibility that her stay could be longer if getting fluids in her becomes a problem. I really like this doctor, he was very attentive to our conversation and thoughtful in his responses.
Goldie's apnea is in the mild range so he feels the surgery should eliminate most of it. Her tonsils are big, not huge, but big enough to cause the mild sleep apnea she experiences. Of course this can vary on any given night depending on what position she sleeps in or if she is sick.
After our appointment they were able to do her bloodwork and her AAI x-ray before they closed at 5:00! I was impressed.
I'm not able to hold Goldie for the x-ray, but Hank was supposed to meet us. However he was still at work in another state. So, a nurse held Goldie while I waited in the hall. In the hall was the computer that the x-ray pictures come up on. I immediately noticed a gap between her first and second vertebrae. Of course I have no idea how much of a gap is normal, so I've been worried sick ever since we left. I asked how soon her x-ray would be read and was told tomorrow. I was not going to ask the tech. Lesson learned from the sleep study. I am praying everything is ok. My mind always imagines the worst case scenario. The funny thing is, if I wasn't unexpectedly pregnant I wouldn't have pushed the sleep issue and she wouldn't have had her x-ray until next year. So, if its normal I can relax, and if it's not we'll be glad we know so we can keep her safe and do whatever else is necessary.
Thursday, July 16, 2009
Sneek Peek at the Sleep Study Results
I took Goldie to the pediatrician this week to get another script for her bloodwork. She was more than happy to add zinc and selenium. She also wants to check her calcium since she's been constipated. She agrees that is most likely due to the lack of fluids. Goldie has been drinking more, but she's not happy with her chin to her chest everytime she takes a drink. I will be talking to the ENT about that next week. (BTW, I kept my journal, but the SLP at Children's never followed up with us.)
So while I was updating her on Goldie's health she mentioned that she had the sleep study results. I was so excited to get them before our visit to the ENT so I can have all my ducks in a row when we get there. The results are... abnormal sleep pattern due to an obstructed airway. Recommend removal of tonsils and adenoids.
The ped. reminded me that we don't have to follow the recommendations, the choice is ours if we want surgery or not. (I don't know what our other options would be. We can't not treat her sleep apnea.) What I want is for Goldie to be able to sleep at night and wake up rested. The last two nights have been awful with her waking constantly. Even with an extra nap she is still exhausted by dinner time. Sometimes crying and hitting her herself in the head. (headache?)
I have to admit my first reaction to the results, was to laugh and say "no, really?" I'm not happy that Goldie has sleep apnea, but I'm thrilled to be vindicated. This means I get to finish my letter to the dr at the DS Clinic who suggested breastfeeding was the cause and sleep training the solution.
So, if anyone has any suggestions or knows anything I should ask the ENT about, please comment!
So while I was updating her on Goldie's health she mentioned that she had the sleep study results. I was so excited to get them before our visit to the ENT so I can have all my ducks in a row when we get there. The results are... abnormal sleep pattern due to an obstructed airway. Recommend removal of tonsils and adenoids.
The ped. reminded me that we don't have to follow the recommendations, the choice is ours if we want surgery or not. (I don't know what our other options would be. We can't not treat her sleep apnea.) What I want is for Goldie to be able to sleep at night and wake up rested. The last two nights have been awful with her waking constantly. Even with an extra nap she is still exhausted by dinner time. Sometimes crying and hitting her herself in the head. (headache?)
I have to admit my first reaction to the results, was to laugh and say "no, really?" I'm not happy that Goldie has sleep apnea, but I'm thrilled to be vindicated. This means I get to finish my letter to the dr at the DS Clinic who suggested breastfeeding was the cause and sleep training the solution.
So, if anyone has any suggestions or knows anything I should ask the ENT about, please comment!
Saturday, July 11, 2009
Physical Therapy
Maybe it's the pregnancy (all ready?) but I'm beat from chasing Goldie around by the end of the day. Well, actually by lunch. I've been questioning whether she still needs PT. I know there are things she still has to do, like running and jumping. I have the book Gross Motor Skills in Children with Down Syndrome and spent some time this week looking over the checklists. Out of the 45 motor milestones there are only 9 left for us to work on. We also continue to help her build up endurance and strength.
Hank and I talked about it and we really feel that we can handle these last 9 on our own. It helps that Goldie is such a physically motivated girl. She also has 2 sisters that keep her moving, a swing set, riding toys, and the country side at her disposal. PT has been one of the easiest things for us to do as a family on a consistent basis. Just this week she mastered climbing the ladder to the slide all by herself. I'm so proud and scared all at once! At first she would only do it once. Now, she does it over and over. I love to see how strong she is getting.
Now, how do I tell the PT? She's been coming for 2 years and when we dropped from every week to 2x a month I could tell she was disappointed. My eyes got all wet just talking about it. Hank said I'm just being an emotional pregnant woman. The PT was here yesterday and I couldn't bring it up.
I've really grown to like her. We chat about our families and she is great at showing me how to help Goldie. But, yesterday she said something that's been bugging me. She asked me about Goldie's swallow study and if she was drinking any more. I told her how that was going and went on to tell her about taking Goldie swimming. Goldie has never really enjoyed swimming. She usually hangs on my neck, then I pry her off of me into a floatation device and try to keep her moving and happy. I realized this week that what she hates is the water going in her mouth (she chokes and gags). If I hold up the front of her floaty or if she holds herself up she is much happier. I think this is also why she doesn't like me rinsing her hair during her bath. Getting back on track now, I tell all this to the PT. Her response, " I don't know. Are they smart enough to make that connection? Really, are they smart enough to know what will happen when they get in a pool?" My response, absolute silence. Did she mean any 2 year old or does "they" mean kids with DS? I have a 2 yo niece and I don't think anyone would question if she could make that connection. Am I being overly sensitive?
After that conversation I'm not as sad about letting her go. While I like her, she has never set very high expectations for Goldie. She was always a little skeptical when I told her Goldie had learned something new. I had to add walking to her IFSP last year.
And since I finally got the camera back from my husband, here is a picture of Goldie smelling a flower "with her nose, not her hands."
Hank and I talked about it and we really feel that we can handle these last 9 on our own. It helps that Goldie is such a physically motivated girl. She also has 2 sisters that keep her moving, a swing set, riding toys, and the country side at her disposal. PT has been one of the easiest things for us to do as a family on a consistent basis. Just this week she mastered climbing the ladder to the slide all by herself. I'm so proud and scared all at once! At first she would only do it once. Now, she does it over and over. I love to see how strong she is getting.
Now, how do I tell the PT? She's been coming for 2 years and when we dropped from every week to 2x a month I could tell she was disappointed. My eyes got all wet just talking about it. Hank said I'm just being an emotional pregnant woman. The PT was here yesterday and I couldn't bring it up.
I've really grown to like her. We chat about our families and she is great at showing me how to help Goldie. But, yesterday she said something that's been bugging me. She asked me about Goldie's swallow study and if she was drinking any more. I told her how that was going and went on to tell her about taking Goldie swimming. Goldie has never really enjoyed swimming. She usually hangs on my neck, then I pry her off of me into a floatation device and try to keep her moving and happy. I realized this week that what she hates is the water going in her mouth (she chokes and gags). If I hold up the front of her floaty or if she holds herself up she is much happier. I think this is also why she doesn't like me rinsing her hair during her bath. Getting back on track now, I tell all this to the PT. Her response, " I don't know. Are they smart enough to make that connection? Really, are they smart enough to know what will happen when they get in a pool?" My response, absolute silence. Did she mean any 2 year old or does "they" mean kids with DS? I have a 2 yo niece and I don't think anyone would question if she could make that connection. Am I being overly sensitive?
After that conversation I'm not as sad about letting her go. While I like her, she has never set very high expectations for Goldie. She was always a little skeptical when I told her Goldie had learned something new. I had to add walking to her IFSP last year.
And since I finally got the camera back from my husband, here is a picture of Goldie smelling a flower "with her nose, not her hands."
Labels:
climbing,
Early intervention,
physical therapy,
swallowing
Thursday, June 25, 2009
Goldie's Drinking Journal
Thought I would post what I have so far of the journal I'm keeping in regards to Goldie's drinking and swallowing. I definitely see a pattern emerging.
6/23/2009
Goldie took a couple sips with her chin tucked and did well. At dinner she was holding her cup and drinking with her head up. A lot of liquid came back out of her mouth and she started coughing.
6/24/2009
Goldie was not very interested in drinking today. Before bed her sister made a glass of chocolate soymilk and let Goldie try some. When we made Goldie her own cup she drank most of it with a straw. She did well drinking with her chin tucked. She sat on the living room floor and was able to hold her cup in front of her chest by herself.
6/25/2009
Not interested in drinking this morning. I think my milk supply is increasing because she was nursing a lot and had two very wet diapers.
Goldie woke up thirsty from her afternoon nap. She took a long drink of juice (chin tucked) and did well. She continued to drink well throughout the afternoon and dinner.
She was eating dinner in her highchair. I have to hold her cup off to the side so it is low enough for her to drink safely. When she held the cup herself, above the tray, she began coughing and pushed her drink at me.
Prior to the swallow study we didn't know that her chin needed to be down throughout the entire suck and swallow. I would offer her drink lower so she would have to bend down, but I wasn't making sure she held that position until she finished swallowing. I'm thinking that drinking from an open cup will be tricky until she outgrows this. Less mess for me, right?!
6/23/2009
Goldie took a couple sips with her chin tucked and did well. At dinner she was holding her cup and drinking with her head up. A lot of liquid came back out of her mouth and she started coughing.
6/24/2009
Goldie was not very interested in drinking today. Before bed her sister made a glass of chocolate soymilk and let Goldie try some. When we made Goldie her own cup she drank most of it with a straw. She did well drinking with her chin tucked. She sat on the living room floor and was able to hold her cup in front of her chest by herself.
6/25/2009
Not interested in drinking this morning. I think my milk supply is increasing because she was nursing a lot and had two very wet diapers.
Goldie woke up thirsty from her afternoon nap. She took a long drink of juice (chin tucked) and did well. She continued to drink well throughout the afternoon and dinner.
She was eating dinner in her highchair. I have to hold her cup off to the side so it is low enough for her to drink safely. When she held the cup herself, above the tray, she began coughing and pushed her drink at me.
Prior to the swallow study we didn't know that her chin needed to be down throughout the entire suck and swallow. I would offer her drink lower so she would have to bend down, but I wasn't making sure she held that position until she finished swallowing. I'm thinking that drinking from an open cup will be tricky until she outgrows this. Less mess for me, right?!
Labels:
extended breastfeeding,
swallowing,
toddler nursing
Tuesday, June 23, 2009
Swallow Study
Hank and I took Goldie for her swallow study today. She did incredibly well! Which is good and bad. Its good that she is capable of swallowing safely, because she did it for them. But, I swear she aspirates 90% of the time she has a drink. So they managed to catch her the other 10% of the time. They think it may have something to do with her head posture, so now I have to keep a journal for a week so we can figure out what will work. Her head needs to be tilted down through the entire suck and swallow when drinking from a straw. I wish they had thought to have her drink with her head up while they were doing the test. Oh well.
After we got to the van, Hank tells me that they asked him if she had trouble sleeping. He said, "Yes, she has a sleep study next week" They said to let them know how it goes. I'm wondering if they saw some reflux and that led them to ask about her sleep? I'll ask when she calls next week.
Another good thing, there was no negativity toward Goldie still breastfeeding. She asked if I planned to wean her or continue after the baby comes. I told her I would like for Goldie to keep nursing after the baby arrives. She wrote it down in her paperwork and moved on to the next topic. It was nice not to have my decision questioned or looked down on.
As for myself, I started taking Unisom on Sunday and I feel like a different person. Not back to my old self but almost!
After we got to the van, Hank tells me that they asked him if she had trouble sleeping. He said, "Yes, she has a sleep study next week" They said to let them know how it goes. I'm wondering if they saw some reflux and that led them to ask about her sleep? I'll ask when she calls next week.
Another good thing, there was no negativity toward Goldie still breastfeeding. She asked if I planned to wean her or continue after the baby comes. I told her I would like for Goldie to keep nursing after the baby arrives. She wrote it down in her paperwork and moved on to the next topic. It was nice not to have my decision questioned or looked down on.
As for myself, I started taking Unisom on Sunday and I feel like a different person. Not back to my old self but almost!
Labels:
breastfeeding,
pregnancy,
swallowing,
toddler nursing
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