Ryan has had an interesting six weeks. He has had the GI flu twice in a month, which is not good for him as he cannot afford to not eat. I am hoping the longer he is in "school", the more immune he will come to the germs. We shall see if that is successful or wishful thinking. :)
Ryan had a swallow study at the end of September. Unfortunately, he was worse. That is a rare occurrence and unfortunate. He is now on honey-thickened liquids. His reflux medications were increased. These changes helped him to want to drink his bottle. He started to eat off his high chair tray. We thought we were on our way...
Then....we went for his weight check on Friday. Not only had he not gained weight, he had lost five ounces in the last month. He now has an official diagnosis of failure to thrive.
So he is now to change to pediasure in his bottles as it offers 30 calories as opposed to high calories formula which offers 24. Both have to be thickened. He does not like pediasure and is now refusing most food as well as his bottles, both formula and pediasure. Luckily we have an appointment with the ENT/swallowing specialist Monday morning (already scheduled). He will be deciding if he needs to scope Ryan under anethesia. I am thinking that is likely. Luckily, I have been through a few of these. :)
We will see what the next appointments hold. He continues to refuse to eat on a regular basis and most food. It is a strange phenomenon and one that is hard for all of us to comprehend. It has been interesting and hard to have two children with "special needs". I just have to remember the poem Maggie tells me regularly: "you get what you get, and you don't throw a fit". I am so thankful they are in our lives and that their minds/brains seem okay. Ryan has met all of his developmental milestones. We focus on the positives and try not to dwell on the negative.
We are very, very thankful for all the love and support from everyone!!!
Saturday, November 5, 2011
Maggie
Maggie wants a post about her. So I will write one. It can be hard to have two siblings with so many health issues. She is a very good sport about the whole thing. She is also an excellent big sister. She watches to make sure they do not get anything they are not supposed to and will make sure people know what they can and cannot give her siblings.
Maggie has loved kindergarten. Her teachers are wonderful with tons of experience. We couldn't ask for better teachers for Maggie. She has many friends and stays very, very busy. She is full of ideas and energy that never seems to end. She continues to take dance and tells us she loves it. She and I will be attending the nutcracker together in December. She cannot wait. Next year she will be old enough to try out for a part. I am not sure I am ready. :) She also loves that her sister takes dance at the same studio. They often perform dances for us on what they have been learning. It is very cute!
This past week, Maggie had a program at school for grandparents and special friends. It was very cute. The theme was Happy Birthday as her school is celebrating its 40th birthday (40th year in existence). My mother was able to come and sat front and center, much to Maggie's delight. It was an adorable program, and I am so thankful we have found such a wonderful school for Maggie!
Maggie has loved kindergarten. Her teachers are wonderful with tons of experience. We couldn't ask for better teachers for Maggie. She has many friends and stays very, very busy. She is full of ideas and energy that never seems to end. She continues to take dance and tells us she loves it. She and I will be attending the nutcracker together in December. She cannot wait. Next year she will be old enough to try out for a part. I am not sure I am ready. :) She also loves that her sister takes dance at the same studio. They often perform dances for us on what they have been learning. It is very cute!
This past week, Maggie had a program at school for grandparents and special friends. It was very cute. The theme was Happy Birthday as her school is celebrating its 40th birthday (40th year in existence). My mother was able to come and sat front and center, much to Maggie's delight. It was an adorable program, and I am so thankful we have found such a wonderful school for Maggie!
More Questions
Claire had a visit with the gastroenterologist in Mid-October. It was my hope that she would be discharged from the clinic especially since she no longer had a feeding tube. Unfortunately, that was not the case. He is concerned that Claire has a "pouch" in her stomach. That along with some other complaints has the doctor concerned. He did not offer much except to test Claire for celiac disease (for which I assume she is negative since I heard nothing). After talking with her pediatrician, we are going to wait and see what happens after Claire is off her reflux medication and taking "regular" consistency liquids. Hopefully the removal of those things will take care of the situation. It is something we will monitor. If we do continue to be concerned then we may consider taking Claire to Dallas/Houston to have her examined by a gastroenterologist there. For now it is a monitor and wait and see situation.
Also, Claire continues to snore and may have brief periods where she stops breathing (called apnea). Secondary to this, the pediatrician has ordered a sleep study. We will see where that leads us. This may be tied to her frequent infections and the fact she cannot seem to get rid of a cold and instead it becomes a sinus infection. We shall see....another adventure for us. With the holidays I have no idea when the test will take place. I will try to do a better job of keeping everyone updated. I apologize that I have not been better. Working, the three kids, their activities and my volunteering seem to "eat up" time.
Also, Claire continues to snore and may have brief periods where she stops breathing (called apnea). Secondary to this, the pediatrician has ordered a sleep study. We will see where that leads us. This may be tied to her frequent infections and the fact she cannot seem to get rid of a cold and instead it becomes a sinus infection. We shall see....another adventure for us. With the holidays I have no idea when the test will take place. I will try to do a better job of keeping everyone updated. I apologize that I have not been better. Working, the three kids, their activities and my volunteering seem to "eat up" time.
Claire's Therapy Update
Claire "graduated" out of physical therapy in August. The recommendation is that she be evaluated again in December/January and make sure she has not regressed. I am not sure that she has as she seems to get around pretty well. She is much slower than most but that may always be the case. Her class at school is made primarily children that were two in the spring so she is able to keep up with them quite well (seeing as she is three). That class has been nice as it is a bit smaller and she gets alot of one on one attention, which she loves.
Claire continues with an hour of occupational therapy each week. The emphasis has shifted to fine motor skills, such as dressing, scissors, use of a crayon, etc. She still has marked weakness throughout her body. Medically this is called hypotonia, or weak muscles. It may be over time they grow stronger but no one really knows as there dodes not seem to be a "reason" for it. Ms. Paula, her therapist, who she adores says she is getting stronger. Still a ways to go. It is possible she will have enough skills come March to "graduate" from OT. I am not sure what she will think of this as she and Ms. Paula are very tight. :)
Speech continues to be an area of "weakness" for Claire. Her evaluation in August placed her at about 24 months so about a year behind. She remains very week in her lower jaw which effects speech and feeding. She is making strides and the speech/feeding therapist we have now is wonderful! She is very knowledgeable, especially for a new graduate. She did training and Children's Medical Center at Dallas so she has experience with more complex kids like Claire. It is likely Claire will remain in speech for the forseeable future. Each year she is to gain more sounds/articulation so it is difficult to catch up once behind, at least at this young age. Maybe she will grow out of feeding therapy but we have a ways to go. She is having difficulty mastering drinking out of an open cup. Always something.
Hopefully I will get a chance to update about the newest tests and discussions with the doctors as well as info about Ryan and Maggie. Our house stays pretty busy!!
Thanks for taking the time to keep up with us!
Claire continues with an hour of occupational therapy each week. The emphasis has shifted to fine motor skills, such as dressing, scissors, use of a crayon, etc. She still has marked weakness throughout her body. Medically this is called hypotonia, or weak muscles. It may be over time they grow stronger but no one really knows as there dodes not seem to be a "reason" for it. Ms. Paula, her therapist, who she adores says she is getting stronger. Still a ways to go. It is possible she will have enough skills come March to "graduate" from OT. I am not sure what she will think of this as she and Ms. Paula are very tight. :)
Speech continues to be an area of "weakness" for Claire. Her evaluation in August placed her at about 24 months so about a year behind. She remains very week in her lower jaw which effects speech and feeding. She is making strides and the speech/feeding therapist we have now is wonderful! She is very knowledgeable, especially for a new graduate. She did training and Children's Medical Center at Dallas so she has experience with more complex kids like Claire. It is likely Claire will remain in speech for the forseeable future. Each year she is to gain more sounds/articulation so it is difficult to catch up once behind, at least at this young age. Maybe she will grow out of feeding therapy but we have a ways to go. She is having difficulty mastering drinking out of an open cup. Always something.
Hopefully I will get a chance to update about the newest tests and discussions with the doctors as well as info about Ryan and Maggie. Our house stays pretty busy!!
Thanks for taking the time to keep up with us!
Claire declared "normal"
Don't let the title fool you. I don't think anyone related to me could ever be truly normal; however, in late August the swallowing specialist declared that he considered Claire a normal kid now. That was after she "passed" her swallow study with flying colors. Nothing went to her lungs. So we are now trying to slowly make her liquids thinner and thinner with the hope she will be on normal consistency liquids by the end of this calendar year.
The reason for the "slow" move to normal consistency liquids is her muscles are not used to swallowing and need to be "trained". So far we have not had any choking or issues. We are very excited.
She has had her first cold which became a sinus infection. Her pediatrician does not feel it is related to liquids, just the way she is. So "sick season" begins for her. She still has her tubes so maybe we can avoid ear infections....now it is coughing to keep her and mommy up all night. :)
The reason for the "slow" move to normal consistency liquids is her muscles are not used to swallowing and need to be "trained". So far we have not had any choking or issues. We are very excited.
She has had her first cold which became a sinus infection. Her pediatrician does not feel it is related to liquids, just the way she is. So "sick season" begins for her. She still has her tubes so maybe we can avoid ear infections....now it is coughing to keep her and mommy up all night. :)
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