On Tuesday, Nov. 5th, we went to the Childrens Medical center for Anna's feeding evaluation. We were a bit nervous, at least I was, wondering what they would say. At the end of the day we were disappointed. The evaluation wasn't done nearly as well as when we went to DC, it was hectic and disorderly. Anna was very upset...we were all crowded in a tiny check-up room, 6 adults and Anna, for almost 2 hours. They listened, wrote notes, and at the end informed us that if we chose to go with them, it would be about a 9 month wait. Also, it would be out-patient, which means that we would have to drive to RIchmond for a 2pm appt once a week, and then back home. Anyone living in Northern Va just said, 'wow' out loud I am sure. Anna's weight is 24lbs 6ozs still, enough for her to be not categorized as failure to thrive, which is a good thing, but also means not medically necessary for her to be inpatient. Then they informed us that we may not like their approach. It is not just geared towards sensory children or children with feeding disorders, basically they have the same approach for all the children, behavioral modification. This idea is to bribe a child, give praise, and starve them...whatever it takes to get her to take a bite. We have been told not to do this approach with her, that it would most likely set her back. Chris and I do not feel comfortable with this approach and so we are once again looking for some program that deals with feeding disorders, for selective eating, not just picky eaters. There is a huge difference, one this program and many others are missing...disheartening for sure...
As for her eating...she is drinking bottles again well. Her calories are up so she is maintaining her weight. She will eat bacon, macaroni and cheese (kraft), and now after 18 months is feeding herself spoons of broccoli cheddar soup from Panera, and the baguette of course! She eats her McDonald's french fries and then her normal safe foods such as cheerios, veggie straws, triscuits, graham crackers and yogurt drops (dehydrated yogurt). So, for now, we will keep trying to broaden her list of foods and keep trying to find someone who is more sympathetic to children with SPD and high anxiety, and eating disorders.
As for her eating...she is drinking bottles again well. Her calories are up so she is maintaining her weight. She will eat bacon, macaroni and cheese (kraft), and now after 18 months is feeding herself spoons of broccoli cheddar soup from Panera, and the baguette of course! She eats her McDonald's french fries and then her normal safe foods such as cheerios, veggie straws, triscuits, graham crackers and yogurt drops (dehydrated yogurt). So, for now, we will keep trying to broaden her list of foods and keep trying to find someone who is more sympathetic to children with SPD and high anxiety, and eating disorders.
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Are we done? :(
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Halloween! Amanda made a pumpkin especially for Anna with Jack from Nightmare Before Christmas...Anna loved it! And gave Jack a Big Kiss! Pumpkin carving didn't go too well, Anna got scared and was not pleased with daddy cutting open the pumpkin...but painting pumpkins was much more fun!
She had a good time trick or treating too! She liked to say trick or treat, and then would ask if she could go inside...each time, but then we said bye bye and left the houses. She had fun grabbing all the candy, with no intentions on eating it. Funny, she seemed disappointed when she got home and dumped her bag and had only candy...I'm not sure what she expected. I guess next year we could slip in a few toys for her if she is still not interested in candy. I guess there's a good side to feeding disorders too...she won't touch sweets. Nah, I would love for her to eat cookies, cakes and candy...ice cream, brownies...etc.
She had a good time trick or treating too! She liked to say trick or treat, and then would ask if she could go inside...each time, but then we said bye bye and left the houses. She had fun grabbing all the candy, with no intentions on eating it. Funny, she seemed disappointed when she got home and dumped her bag and had only candy...I'm not sure what she expected. I guess next year we could slip in a few toys for her if she is still not interested in candy. I guess there's a good side to feeding disorders too...she won't touch sweets. Nah, I would love for her to eat cookies, cakes and candy...ice cream, brownies...etc.
Kissing Jack
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With Nanny
Queen of the Hill
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With Amber
Anna has qualified for county special needs services and is to start pre-school as soon as we are ready. Chris and I are going to make sure she is comfortable with the teacher and the classroom as we slowly transition her. There will be one teacher and an aid for Anna and two other students. We are very excited and anxious at the same time. We do think this will be good for her social skills and hope it helps with her language. We are considering asking for speech to come to our home once a week...still debating that choice. Amber came to visit and we had a nice Panera dinner with her. Anna loved her sunglasses!
Two and Half !!!
Learning the guitar
First, Anna is two and a half! WOW. Lots of new news...Anna had her Speech evaluation by county services and they said yes, she does qualify for services. So that is nice, hoping we can not only expand her vocabulary but be able to understand her. She tries so hard, and actually the SLP was impressed with how many words she did say, even if they are hard to understand. She has been signing new signs too. She did great at the evaluation, played with the toys and talked more then usual around strangers.
On friday we had the overall evaluation by county services. They checked her for motor skills, etc. I'm not sure of those results yet, but she told me that Anna will be getting an IEP and they will start a program for her to learn more things. The goals are for her to be ready for kindergarten in a few years, so I'm happy that we can get started so early. We have a meeting on thursday.
Her weight is a mystery to us all. Some how she has gained the weight she had lost, well, some of it and is now at 24 lbs again. That's always a relief for us. We won't be seeing the pediatrician until next week, but will have more news then I am sure. She is just amazing and full of energy! Love this little pookie!
On friday we had the overall evaluation by county services. They checked her for motor skills, etc. I'm not sure of those results yet, but she told me that Anna will be getting an IEP and they will start a program for her to learn more things. The goals are for her to be ready for kindergarten in a few years, so I'm happy that we can get started so early. We have a meeting on thursday.
Her weight is a mystery to us all. Some how she has gained the weight she had lost, well, some of it and is now at 24 lbs again. That's always a relief for us. We won't be seeing the pediatrician until next week, but will have more news then I am sure. She is just amazing and full of energy! Love this little pookie!
my first "Jack" Nightmare before Christmas
starting to enjoy hats!
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finally got some rain boots on!
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Sleeping like Dylan :)
I wanted to update everyone on what's been going on, but unfortunately not all of it has happened yet. So this is what we have...Best News anyways!! Anna no longer has any hole in her heart! Two years after her open heart surgery and the residual hole is gone, thank the Lord! That was excellent news for her future, she now has a healthy heart!
More good news...she had a cold, and that is all, no ear infection, it didn't go into her chest...just a cold. whew! That was nice too. Maybe her immune system has gotten stronger? I hope so, with therapy twice a week, with many children, she is bound to catch colds this winter.
She was supposed to be evaluated by county services on tuesday for special education therapy, but the OT canceled due to illness. We still have the speech evaluation on next tuesday, and the rescheduled eval will be next friday. Anna still isn't drinking her bottles well, and as a result is now losing weight. It's both frustrating and worrisome to us. We will be seeing the GI asap, unfortunately that isn't until late November. In the beginning of November we have our eval for the RIchmond Childrens Hospital feeding clinic.
More good news...she had a cold, and that is all, no ear infection, it didn't go into her chest...just a cold. whew! That was nice too. Maybe her immune system has gotten stronger? I hope so, with therapy twice a week, with many children, she is bound to catch colds this winter.
She was supposed to be evaluated by county services on tuesday for special education therapy, but the OT canceled due to illness. We still have the speech evaluation on next tuesday, and the rescheduled eval will be next friday. Anna still isn't drinking her bottles well, and as a result is now losing weight. It's both frustrating and worrisome to us. We will be seeing the GI asap, unfortunately that isn't until late November. In the beginning of November we have our eval for the RIchmond Childrens Hospital feeding clinic.
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My beautiful angel...
Anna is now 29 months old. She is looking a little different I have noticed, getting older I guess. Her weight is dropping a little, but not as much as I anticipated. She is now 24lbs 2ozs. Not that bad for a month of dropping bottles. She is eating some more of her crunchy food but not enough to sustain. I'm thinking its all the french fries she's been eating.
Our therapy has changed days and times, hoping the mornings are a better session time for her. So far, not so much. Her feeding therapy part is getting worse and we are trying to decide exactly what our next course of action should be. For wednesday, we are going to only offer her foods to eat, not foods to play with since the stress is becoming overwhelming for her. Last thing we want to do is give her another bad food experience. Chris and I have noticed her trying to say more words, sentences even. Her latest sentence was in response to get your bottle and she said "ot it" (got it) and "ear go" (here you go). This was really exciting. She is also trying to sound out words when she hears them. We are still waiting for county speech evaluation, yes, still. I called...apparently we are on the 'list'. Whatever that means.
Last week, we made a decision to call the Richmond Feeding clinic. We have an appointment for an evaluation in November. They recommended getting that part done since the clinic is booked way in advance. I have become very concerned with her drinking milk lately, down from her needed intake of 21-24 ozs to days of 12-16ozs. The Gi feeding team Nurse Practitioner has told me to try and average 16ozs a day.
We finally have photos of Anna...it's taken months of fears, but we finally took her. The photographer was excellent! He ran around taking her pictures and crawling on the floor with her. The final result only needed a halo and wings. The photos were just beautiful! The key...was the butterfly
Our therapy has changed days and times, hoping the mornings are a better session time for her. So far, not so much. Her feeding therapy part is getting worse and we are trying to decide exactly what our next course of action should be. For wednesday, we are going to only offer her foods to eat, not foods to play with since the stress is becoming overwhelming for her. Last thing we want to do is give her another bad food experience. Chris and I have noticed her trying to say more words, sentences even. Her latest sentence was in response to get your bottle and she said "ot it" (got it) and "ear go" (here you go). This was really exciting. She is also trying to sound out words when she hears them. We are still waiting for county speech evaluation, yes, still. I called...apparently we are on the 'list'. Whatever that means.
Last week, we made a decision to call the Richmond Feeding clinic. We have an appointment for an evaluation in November. They recommended getting that part done since the clinic is booked way in advance. I have become very concerned with her drinking milk lately, down from her needed intake of 21-24 ozs to days of 12-16ozs. The Gi feeding team Nurse Practitioner has told me to try and average 16ozs a day.
We finally have photos of Anna...it's taken months of fears, but we finally took her. The photographer was excellent! He ran around taking her pictures and crawling on the floor with her. The final result only needed a halo and wings. The photos were just beautiful! The key...was the butterfly
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Aquarium
FInally got to take Anna to the Baltimore Aquarium. They don't allow strollers so the first issue was daddy had to wear her the whole time. She did quite well actually with that. She did't like that many areas were pretty dark and that she couldn't touch anything. She really got upset when we went in to see where the dolphins were, and them setting up for the show. Anna thought that was a pool and wanted to swim! Before we left we decided to let her run around and look at some fish, but when she tried to climb into the pool with the sting rays and sharks we decided it was time to leave. So hoping next time she will have a better understanding of the fish are in the tanks and Anna is not allowed. Sorry, thought I had photos on the computer, guess we need to download. Will get aquarium pics up soon.
