We got the results back from Rachel's lab work and everything points to Celiac Disease. We have an appointment with a Pediatric gastroenterologist on Monday. I came home today to a message from the GI doctor. He stated that he was trying to contact me because, based on the numbers he saw on Rachel's labs, he wants to perform a procedure while we are there on Monday. I am assuming that means he wants to do a biopsy, since that is the way to definitively diagnose Celiac Disease. Not the results I wanted to hear, but not anything we can't handle, either. I will be glad to get over to see the doctor and get a final answer so that we can move forward with the diet change if it is necessary.
Allison got her braces today. The staff said she did great and she has not had any complaints so far, thank goodness. The orthodontist told her that her teeth would be very sore after she got the spacers two weeks ago, and she said they never hurt. Today they told her that her teeth would be getting sore within two hours, but so far so good. Not sure why she is not hurting, but glad it has been so easy for her so far. I remember when I got mine, I was hurting within the first two hours! Allison also got some good news from the orthodontist. She does not have any wisdom teeth! YAY! I never had any, either. I told her she owes me for that!
We are getting our house painted in the next week. The painter showed up here today and started pressure washing and will be back tomorrow. I guess they will start painting Monday or Tuesday. I am nervous about the colors I have picked. I have the hardest time picking paint colors. They never look like I expect them to. I have painted two small areas on the house and have looked at them over several days and in different light.....shade, direct sun, etc. I hope I will like it.
Thursday, March 14, 2013
Wednesday, March 6, 2013
Hey, It's Me Again!
I think about this poor neglected blog often, and think I need to sit down and write about this or that, but when I actually sit down, my mind goes blank. I had to go back and look up something in my blog a week or so ago, and it was interesting to see how much I actually used to post. It was fun for me to go back and see the old posts. It is also getting to the point where my dad cannot talk to me on the phone because he can no longer hear me well enough to understand what I am saying, so I think that I really should make a point to document our lives here for him, too. So I am going to try to post a little more frequently. Wish me luck.
Okay, here goes with updates on the girls. Allison is getting braces!! Well, that is no surprise, but we did not realize it was going to be so soon. She went to the orthodontist in January and was told she had to get all her remaining baby teeth out as soon as possible. The orthodontist had let Allison go as long as she could to hopefully get the teeth out on her own, but her grown up teeth were coming in in all different directions and the baby teeth were not budging. The last week of January, Allison had seven (yes, seven!) baby teeth pulled. The orthodontist told us that she would probably have to wait about six months for the grown up teeth to come in enough for braces, but Allison went in for a check up on Monday and the doctor told her she was ready. She got spacers put in while we were there and is scheduled to go get her braces next Thursday.
Leah, Leah, Leah........my oft neglected middle child. She is cruising along not giving me any grief. The most traumatic thing to happen in her life lately is that her hamster died. She had only had it since August when we adopted it from a friend that was moving. It was already a couple of years old when we got it. She was heartbroken! Within two days, we had added a new pet to the family. The same little girl that gave us the hamster when she moved in August, had left behind a hedgehog with another neighbor, and they were looking to re home the hedgehog after their daughter started having problems with her allergies. So Leah is now the proud owner of a hedgehog. They are interesting little creatures. Poppy spends a lot of her time balled up and hissing at anyone and anything she perceives as a threat-which would be everything! But when she does "come out of her shell", she is incredibly cute! Two weeks after Leah's hamster passed away, Allison's hamster died too. The hamsters were brothers, so it was not a total surprise that they died about the same time, but it was much closer in timing than I was expecting.
Where to start with Rachel? She is making great progress with her language. She is putting more and more words together and is talking so much these days. At the table the other day she was trying to tell me something and I could not figure out what she was saying, so she gave me a hint. I was still lost, so she gave me another. On the third hint I was able to figure it out and was amazed that she was able to put those three words together to help me figure out what she was talking about. She has lots of two word phrases now. I am so excited to hear new things from her! Unfortunately in the weight department, Rachel is not making gains, and is actually losing ground. She went in to the endocrinologist in January, and he was not happy with her weight. He prescribed a medication to stimulate her appetite. She had been on the med for about three weeks, and we had not really noticed any changes, but she did start having tummy troubles. I took her off med a week ago Sunday. She still continues to have the tummy problems, though. I took her in to the pediatrician last week and had some blood work done. Several of the symptoms Rachel has are consistent with Celiac disease, which is not uncommon in children with Down syndrome. We are still waiting on the results. For those that may not know, that would mean that Rachel would have to eat gluten free. Not as hard as it used to be to find gluten free products, but not sure how hard it would be to convert her palate to gluten free.
In February I went to a free clinic for children with Down syndrome. I got to see several specialists and talk with them about some concerns. The PT I saw agrees with me that Rachel needs different orthotics to give her feet better support, so I need to get to work on that. The ENT was concerned that Rachel still had a tube in her ear from three years ago and that she had a flat tympanogram, meaning her ear drums are not moving like they should. He provided me with info to go back to her ENT with, so I called and set up an appointment with him. I was disappointed that we were going to have to wait until the third week of March to see him, and then they called yesterday and told me that they were going to have to reschedule to the middle of April. I told them to just forget about it. Now I am looking for another ENT. Also, the dentist we were seeing just left her practice to stay home with her kids, so I am looking for another dentist for Rachel too. Doctors, doctors, and more doctors!! I am so glad that Rachel is healthy! Really, she is very healthy for the most part!
So that is it, pretty much, in a coconut shell! ;-)
Okay, here goes with updates on the girls. Allison is getting braces!! Well, that is no surprise, but we did not realize it was going to be so soon. She went to the orthodontist in January and was told she had to get all her remaining baby teeth out as soon as possible. The orthodontist had let Allison go as long as she could to hopefully get the teeth out on her own, but her grown up teeth were coming in in all different directions and the baby teeth were not budging. The last week of January, Allison had seven (yes, seven!) baby teeth pulled. The orthodontist told us that she would probably have to wait about six months for the grown up teeth to come in enough for braces, but Allison went in for a check up on Monday and the doctor told her she was ready. She got spacers put in while we were there and is scheduled to go get her braces next Thursday.
Leah, Leah, Leah........my oft neglected middle child. She is cruising along not giving me any grief. The most traumatic thing to happen in her life lately is that her hamster died. She had only had it since August when we adopted it from a friend that was moving. It was already a couple of years old when we got it. She was heartbroken! Within two days, we had added a new pet to the family. The same little girl that gave us the hamster when she moved in August, had left behind a hedgehog with another neighbor, and they were looking to re home the hedgehog after their daughter started having problems with her allergies. So Leah is now the proud owner of a hedgehog. They are interesting little creatures. Poppy spends a lot of her time balled up and hissing at anyone and anything she perceives as a threat-which would be everything! But when she does "come out of her shell", she is incredibly cute! Two weeks after Leah's hamster passed away, Allison's hamster died too. The hamsters were brothers, so it was not a total surprise that they died about the same time, but it was much closer in timing than I was expecting.
Where to start with Rachel? She is making great progress with her language. She is putting more and more words together and is talking so much these days. At the table the other day she was trying to tell me something and I could not figure out what she was saying, so she gave me a hint. I was still lost, so she gave me another. On the third hint I was able to figure it out and was amazed that she was able to put those three words together to help me figure out what she was talking about. She has lots of two word phrases now. I am so excited to hear new things from her! Unfortunately in the weight department, Rachel is not making gains, and is actually losing ground. She went in to the endocrinologist in January, and he was not happy with her weight. He prescribed a medication to stimulate her appetite. She had been on the med for about three weeks, and we had not really noticed any changes, but she did start having tummy troubles. I took her off med a week ago Sunday. She still continues to have the tummy problems, though. I took her in to the pediatrician last week and had some blood work done. Several of the symptoms Rachel has are consistent with Celiac disease, which is not uncommon in children with Down syndrome. We are still waiting on the results. For those that may not know, that would mean that Rachel would have to eat gluten free. Not as hard as it used to be to find gluten free products, but not sure how hard it would be to convert her palate to gluten free.
In February I went to a free clinic for children with Down syndrome. I got to see several specialists and talk with them about some concerns. The PT I saw agrees with me that Rachel needs different orthotics to give her feet better support, so I need to get to work on that. The ENT was concerned that Rachel still had a tube in her ear from three years ago and that she had a flat tympanogram, meaning her ear drums are not moving like they should. He provided me with info to go back to her ENT with, so I called and set up an appointment with him. I was disappointed that we were going to have to wait until the third week of March to see him, and then they called yesterday and told me that they were going to have to reschedule to the middle of April. I told them to just forget about it. Now I am looking for another ENT. Also, the dentist we were seeing just left her practice to stay home with her kids, so I am looking for another dentist for Rachel too. Doctors, doctors, and more doctors!! I am so glad that Rachel is healthy! Really, she is very healthy for the most part!
So that is it, pretty much, in a coconut shell! ;-)
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