Sweet Pea made the trip to Children's Hospital again today and visited her GI & ENT. Spending 3 hours in waiting rooms and exam rooms will test her patience on a good day, and today was not a good day. She survived though and we made it through both appointments.
GI: We sat in the exam room for 70 minutes before the doctor came in. Yes, I'm annoyed! Moving on...The reports from the radiologist and OT of our swallow study still weren't complete so I tried to share what I knew...which wasn't much. The doctor was concerned that she was aspirating and wants us to follow the recommendations we were given. Hopefully the report will be available soon and it will give us more information. Until then we are continuing to use the Simply Thick honey for all formula and liquids and we are going to be adding baby cereal to any purees that are too runny. He wasn't concerned that she is still spitting up typically between 2-4 times a day sometimes much more. It's frustrating, but I'm hoping he knows what he is doing and that we aren't overlooking something. He does want us to do another test...this one is the stomach emptying study which tracks digestion for an hour to see how fast (or in Sweet Pea's case...slow) her stomach works. Since she spits up hours after eating, this is a concern. To end on a good note, he is happy that her weight gain is ok...not great, but not bad.
ENT: This appointment was much better as he is normally very timely and he was this time. Both her ear tubes are still in good position and don't look like they are close to coming out. This is great news since we were told that they could be out in less than 3 months. We are at the 3 month mark and still looking good! We talked about getting a sleep study and he is going to put in the referral for us. He wasn't really recommending we get the study though because he doesn't think there is much to do even if she is having apnea issues. Let me try to explain it as he did...there are two kinds of sleep apnea...obstructive and central. Obstructive is just as it sounds...something is physically obstructing the breathing. Central has to do with the brain and sending proper signals out for proper breathing. The most common "solution" for apnea is to wear a nasal cannula that blows oxygen into your nose. Most kids rip those out immediately and so they don't do any good. Daddy & I believe that it is better to at least know what we are dealing with so that we can make informed decisions. If she does have sleep apnea, I want to know how bad and then determine what we need to try to do. Hopefully she won't have it and this will all be a moot point, but time will tell. The wait for the sleep study could be 3 months so I'll keep you posted when we actually get it scheduled. We go back to the ENT in 3 months again.
To end this post on a high note...Sweet Pea displayed a new trick today. You know those toys that are a bucket and they have a lid that has different shape cutouts in it? We have an older one that only has 3 cutouts and I thought I would try it out with Sweet Pea and see what she would do. I covered up two of the holes with my hand so that she only had one choice and she picked right up on it! The circles and triangles went in quite easily, but the squares proved to be a bit more difficult because they almost fit sideways, but not quite so that kept throwing her off. She is far from good at this, but it's a start! We transferred this new skill to her milk carton toy that has a slit in the top for the cookies to go into and she did that too! We've just left the lid off figuring that she wasn't able to do this...who knew?!?! I will have to ask daycare if this is something that they have been working on with her.
Thursday, June 24, 2010
Tuesday, June 22, 2010
Modified Barium Swallow Study
Today we had the modified barium swallow study to determine if Sweet Pea is aspirating. Surprise surprise...she is! I wish I had trusted my instinct a lot more and pushed to either have this done sooner or at least start modifying how we feed her to try to avoid it. It is extremely frustrating that she is 14 1/2 months old and I'm sure she has been aspirating for some time now and yet we only get confirmation and are told what we need to try to do today. Oh well...at least now we know...
The study itself was really easy. I have posted a video of the view that I saw since Daddy was in there with his little girl. It's interesting to watch, but I can't tell what I'm looking at. I believe what we were told is that she was aspirating on the thin liquid and only penetrating on the nectar thick liquid. Penetrating is when it isn't going into the airway, but goes over the opening to the airway. When there is penetration there is a high chance that at some point some food goes down into the airway. We should get the report next week so hopefully that will make it a little more clear.
We were given some SimplyThick "honey" to add to all her formula and so the price of her formula just went from gold to platinum! We haven't done any research on this stuff yet, but hope to soon. It's supposed to make the formula into a consistency similar to that of honey. The thought is that the thicker the liquid, the harder it is to aspirate because it stays together better. Our main concern is that it contains citric acid and since she isn't allowed food with that, is this going to be an issue? We are going to try it for a few days and see. Hopefully it won't be an issue. The other issue that it seems we are going to run into is that it continues to thicken as it sits. Since we make formula up in batches for both us and for daycare, that is likely to be an issue. We tried it tonight and she can drink it from the straw okay, but the nipple that we have for the bottle is really too small. She was able to get it, but it took a lot of work so we will have to try something else.
If anyone has experience with thickeners I would love to hear about it.
We see the GI on Thursday so I'm glad we got this study completed before that.
Oh, and for those that asked why I suspected aspiration was occurring:
Oh, and we thought she might be finally over that Hand, Foot & Mouth Disease, but tonight there are fresh bumps on her bum so I'm afraid we aren't through with it yet after all.
That's about all the bad news I can handle in one day so I'm heading for bed. Before I go, here are some cute pictures from the day...
Waiting to be called for the study:
Hanging out in the chair before the study began:
Sweet Pea being a goof while Daddy looks like one in his lead outfit:
My view of the study:
The study itself was really easy. I have posted a video of the view that I saw since Daddy was in there with his little girl. It's interesting to watch, but I can't tell what I'm looking at. I believe what we were told is that she was aspirating on the thin liquid and only penetrating on the nectar thick liquid. Penetrating is when it isn't going into the airway, but goes over the opening to the airway. When there is penetration there is a high chance that at some point some food goes down into the airway. We should get the report next week so hopefully that will make it a little more clear.
We were given some SimplyThick "honey" to add to all her formula and so the price of her formula just went from gold to platinum! We haven't done any research on this stuff yet, but hope to soon. It's supposed to make the formula into a consistency similar to that of honey. The thought is that the thicker the liquid, the harder it is to aspirate because it stays together better. Our main concern is that it contains citric acid and since she isn't allowed food with that, is this going to be an issue? We are going to try it for a few days and see. Hopefully it won't be an issue. The other issue that it seems we are going to run into is that it continues to thicken as it sits. Since we make formula up in batches for both us and for daycare, that is likely to be an issue. We tried it tonight and she can drink it from the straw okay, but the nipple that we have for the bottle is really too small. She was able to get it, but it took a lot of work so we will have to try something else.
If anyone has experience with thickeners I would love to hear about it.
We see the GI on Thursday so I'm glad we got this study completed before that.
Oh, and for those that asked why I suspected aspiration was occurring:
- coughing as she drinks
- gurgling/wet sounds after drinking
- a gut feeling for months
Oh, and we thought she might be finally over that Hand, Foot & Mouth Disease, but tonight there are fresh bumps on her bum so I'm afraid we aren't through with it yet after all.
That's about all the bad news I can handle in one day so I'm heading for bed. Before I go, here are some cute pictures from the day...
Waiting to be called for the study:
Hanging out in the chair before the study began:
Sweet Pea being a goof while Daddy looks like one in his lead outfit:
My view of the study:
Monday, June 21, 2010
Hand Mouth & Foot Disease
I've been slowly working on this short post for the past week or two and yet still haven't completed it. Here is my last attempt...
Probably old news to most of you, but since it's such wonderful news I will share it anyway...Sweet Ella is in remission! I had Ellen in my lap as I read the post and when I started clapping, so did Ellen! She too is very excited!!!!! They still have 5 more rounds of chemo to make sure they catch every last bad cell, but this is great news!!!!
Sweet Pea is putting herself into kneeling from a seated position quite regularly now and is even trying to pull herself to stand using us sometimes. She will often launch (and I mean full force launch) herself at us when we are laying down next to her. I think the momentum helps her get up somehow. But if she is close enough for the launching to place her up on us then she pops up on her feet right away. She will even lunge over the top of us to try to get toys that are on the other side which is when she will go head first down the other side of us. Luckily she doesn't cry about it too often and it's quite entertaining to watch!
Her standing is really improving as well. She will move from a seated position (up on our legs or a small box) into standing and maintain the standing for a couple minutes now. It's such a change from a few months back when she refused to put any weight on her legs. I don't even have to hold her anymore, she can lean on the furniture to stabilize herself.
One of the reasons this blog post has been so slow in coming is because Sweet Pea got sent home from day care last Thursday with Hand, Foot and Mouth Disease (HFMD). It hasn't appeared to be painful for her, but I think the lesions in her mouth must hurt because she really slowed down her eating. She had a rash all over her arms, legs and bum that first appeared last Monday and we thought it was an allergic reaction to either the peaches or the squash that she had eaten. We didn't do anything about it because it looked minimal and didn't seem to bother her. Well, apparently a couple other kids at day care had it too so on Thursday they were all sent home and off to the doctor we went. She weighed in at 19lbs 9oz! She is slowly gaining weight and I'm good with slow and steady. The doc said that there wasn't anything we could do for HFMD, but to let it run its course and if she was irritated by the rash to give some Benadryl. We haven't needed to do that and she is eating a lot more now than she was last week so I think we are on the road to recovery. We went back to the bottle because she was drinking more from it than she would from a straw so hopefully we can get back to the straws soon enough. Her rash is almost gone and hopefully she will be able to return to day care tomorrow if it is completely gone.
Speaking of tomorrow, Sweet Pea has her modified barium swallow study tomorrow afternoon. That is where they feed her food and liquid that has been laced with barium and "watch" internally what path it travels to determine if she is aspirating and if she is, then they try to thicken the foods to try to figure out how to stop the aspirating. We are glad to be finally getting this done and hope that Sweet Pea cooperates for it! I'll let you all know how it goes!
We had a good Father's Day and took a trip down to the beach. Sweet Pea put her feet in the sand, but that was about all she wanted to do. The sand was really hot so we had cleared off a section so her only wanting to put her feet in was ok by us. Next time we will take her down to the water and see what she does. She isn't a fan of cold water so I am not hopeful it will go well, but we shall see. I'll try to get some pictures posted in the next few days.
And finally, here is an amazing post on Living Life with E'sthat was written last weekend and it hit home in so many ways. It was great to see a post written by a dad, but what he wrote was even better.
Probably old news to most of you, but since it's such wonderful news I will share it anyway...Sweet Ella is in remission! I had Ellen in my lap as I read the post and when I started clapping, so did Ellen! She too is very excited!!!!! They still have 5 more rounds of chemo to make sure they catch every last bad cell, but this is great news!!!!
Sweet Pea is putting herself into kneeling from a seated position quite regularly now and is even trying to pull herself to stand using us sometimes. She will often launch (and I mean full force launch) herself at us when we are laying down next to her. I think the momentum helps her get up somehow. But if she is close enough for the launching to place her up on us then she pops up on her feet right away. She will even lunge over the top of us to try to get toys that are on the other side which is when she will go head first down the other side of us. Luckily she doesn't cry about it too often and it's quite entertaining to watch!
Her standing is really improving as well. She will move from a seated position (up on our legs or a small box) into standing and maintain the standing for a couple minutes now. It's such a change from a few months back when she refused to put any weight on her legs. I don't even have to hold her anymore, she can lean on the furniture to stabilize herself.
One of the reasons this blog post has been so slow in coming is because Sweet Pea got sent home from day care last Thursday with Hand, Foot and Mouth Disease (HFMD). It hasn't appeared to be painful for her, but I think the lesions in her mouth must hurt because she really slowed down her eating. She had a rash all over her arms, legs and bum that first appeared last Monday and we thought it was an allergic reaction to either the peaches or the squash that she had eaten. We didn't do anything about it because it looked minimal and didn't seem to bother her. Well, apparently a couple other kids at day care had it too so on Thursday they were all sent home and off to the doctor we went. She weighed in at 19lbs 9oz! She is slowly gaining weight and I'm good with slow and steady. The doc said that there wasn't anything we could do for HFMD, but to let it run its course and if she was irritated by the rash to give some Benadryl. We haven't needed to do that and she is eating a lot more now than she was last week so I think we are on the road to recovery. We went back to the bottle because she was drinking more from it than she would from a straw so hopefully we can get back to the straws soon enough. Her rash is almost gone and hopefully she will be able to return to day care tomorrow if it is completely gone.
Speaking of tomorrow, Sweet Pea has her modified barium swallow study tomorrow afternoon. That is where they feed her food and liquid that has been laced with barium and "watch" internally what path it travels to determine if she is aspirating and if she is, then they try to thicken the foods to try to figure out how to stop the aspirating. We are glad to be finally getting this done and hope that Sweet Pea cooperates for it! I'll let you all know how it goes!
We had a good Father's Day and took a trip down to the beach. Sweet Pea put her feet in the sand, but that was about all she wanted to do. The sand was really hot so we had cleared off a section so her only wanting to put her feet in was ok by us. Next time we will take her down to the water and see what she does. She isn't a fan of cold water so I am not hopeful it will go well, but we shall see. I'll try to get some pictures posted in the next few days.
And finally, here is an amazing post on Living Life with E'sthat was written last weekend and it hit home in so many ways. It was great to see a post written by a dad, but what he wrote was even better.
Sunday, June 20, 2010
Hubby makes me smile
Another lost post. This one is probably what I'm saddest about having been delayed. Daddy is the best father and I'm a lucky girl to have him as my husband!!!!!
In honor of Father's Day...we enjoyed a walk at the beach...
And one of the best quotes that Daddy just said, "You do most of the Sweet Pea work when you are awake." For those of you that actually know me in real life you know what a true statement that is! I love to sleep and luckily Sweet Pea takes after me in that regard.
In honor of Father's Day...we enjoyed a walk at the beach...
And one of the best quotes that Daddy just said, "You do most of the Sweet Pea work when you are awake." For those of you that actually know me in real life you know what a true statement that is! I love to sleep and luckily Sweet Pea takes after me in that regard.
Friday, June 11, 2010
TGIF
Friday's are a great day because I know that I have a fun weekend coming up and get to spend a lot of time with my little princess. It's the anticipation, the excitement and the celebration of the end to a long work week and the unknown of the weekend ahead.
Sweet Pea was happy that it was Friday too! This morning she was so happy that she even let me practice crawling up on all fours with her! This is an exercise that our new PT taught me earlier this week. I hold her belly with one hand and with the other hand I move one of her arms forward. Then I switch hands and move her alternate leg forward and then the arm on that same side. Then switch arms again and repeat. When our PT did this with Sweet Pea on Tuesday, little missy was not happy about it, but she did it. When our PT showed me on Wednesday how to do it, Sweet Pea was still mad about it, but again she did it. Imagine my surprise when I tried it this morning and she didn't even protest a little bit! She even moved her own arms and legs forward a little!!!!! I didn't get any video as I only have two hands, but I will try to get some this weekend to show you the miracle...if it repeats.
Here is another great video that CBS did on the wonderful local ballet class for children with DS here in Los Angeles.
http://cbs2.com/video/?id=136458@kcbs.dayport.com
Have a great weekend!!!!
Sweet Pea was happy that it was Friday too! This morning she was so happy that she even let me practice crawling up on all fours with her! This is an exercise that our new PT taught me earlier this week. I hold her belly with one hand and with the other hand I move one of her arms forward. Then I switch hands and move her alternate leg forward and then the arm on that same side. Then switch arms again and repeat. When our PT did this with Sweet Pea on Tuesday, little missy was not happy about it, but she did it. When our PT showed me on Wednesday how to do it, Sweet Pea was still mad about it, but again she did it. Imagine my surprise when I tried it this morning and she didn't even protest a little bit! She even moved her own arms and legs forward a little!!!!! I didn't get any video as I only have two hands, but I will try to get some this weekend to show you the miracle...if it repeats.
Here is another great video that CBS did on the wonderful local ballet class for children with DS here in Los Angeles.
http://cbs2.com/video/?id=136458@kcbs.dayport.com
Have a great weekend!!!!
Thursday, June 10, 2010
Playtime!
Sweet Pea seems to develop in spurts...nothing seems to happen for a while and then whammo...a whole bunch of new skills. Let's see if I can capture of few of these new skills to share with you all.
Playing with her bear and other stuffed animals. Every little one in our family has one of these bears as do most of the little ones in this town! A very special lady makes them with a matching blanket and Sweet Pea's youngest cousin has taught us a thing or two about just how loved these bears can be! "BBBeeaaaarr"
She also has learned to army crawl much farther distance. Here are a couple of video clips of her going across the living room yesterday. I was thrilled with this because she had never gone all the way across before. However, this morning near the end of infant stimulation I used the most expensive toy (extreme sarcasm) as a motivator...printer paper! I actually got her to crawl all the way across the living room, down the short hallway around the corner and to the edge of the kitchen. She put one hand on the cold tile and started protesting. It seemed like she would keep crawling so I jumped over her and she turned around and retraced all her steps back to the living room. I was thrilled that she had let me mess with her for so long so I finally let her play with the paper. Proud Mommy!!!!! I know I'm going to regret teaching her that she can leave the living room, but it will be good for her in the long run. Now I need to start working with her on the tile a little bit. Although, maybe it is good since there is one step down from the kitchen that could cause us problems with her...hmmm...decisions.
Sweet Pea also decided to show me up today by very nicely placing toys into the bucket after I told the infant stimulation teacher that she was still pretty spastic in throwing the toys into the bucket most of the time. That's my girl!
And finally, her babbling has just taken off! She still doesn't say anything that we can understand and the sounds themselves aren't expanding that much, but the amount of time that she spends babbling is really expanding.
Daddy & I love you Sweet Pea!!!!!
Playing with her bear and other stuffed animals. Every little one in our family has one of these bears as do most of the little ones in this town! A very special lady makes them with a matching blanket and Sweet Pea's youngest cousin has taught us a thing or two about just how loved these bears can be! "BBBeeaaaarr"
She also has learned to army crawl much farther distance. Here are a couple of video clips of her going across the living room yesterday. I was thrilled with this because she had never gone all the way across before. However, this morning near the end of infant stimulation I used the most expensive toy (extreme sarcasm) as a motivator...printer paper! I actually got her to crawl all the way across the living room, down the short hallway around the corner and to the edge of the kitchen. She put one hand on the cold tile and started protesting. It seemed like she would keep crawling so I jumped over her and she turned around and retraced all her steps back to the living room. I was thrilled that she had let me mess with her for so long so I finally let her play with the paper. Proud Mommy!!!!! I know I'm going to regret teaching her that she can leave the living room, but it will be good for her in the long run. Now I need to start working with her on the tile a little bit. Although, maybe it is good since there is one step down from the kitchen that could cause us problems with her...hmmm...decisions.
Sweet Pea also decided to show me up today by very nicely placing toys into the bucket after I told the infant stimulation teacher that she was still pretty spastic in throwing the toys into the bucket most of the time. That's my girl!
And finally, her babbling has just taken off! She still doesn't say anything that we can understand and the sounds themselves aren't expanding that much, but the amount of time that she spends babbling is really expanding.
Daddy & I love you Sweet Pea!!!!!
Wednesday, June 9, 2010
Subscribe to:
Posts (Atom)