GI

GI Update

We had Kylee's GI appointment today and it went really well. This was my mom's first time meeting Dr. Noe and she was very surprised at how well we meshed. We both had the same thought process on many things. One of my issues was her huge weight gain (she gained 6lbs in a couple of months). We are going to watch her for another month and see how she does. If she continues to gain weight then we are going to decrease her calorie intake and give her more water. Right now she is 20% for weight and 25% for height and he wants the two to stay pretty close to each other. We also talked about how she has been throwing up again every night and how we didn't seem to have the problem for a while. We have decided to schedule her to go in and have a scope put down her to check everything out to make sure there isn't anything going on. One thing several of the 1P36 kids have is something called EE (it has a much lager name then that but no way could I spell that). This would help rule that out. He said if she has EE it will be one for the medical books (the milk she is on is one they use for children that have EE) but it is worth ruling out as she does have many symptoms of it. We also get to work her from being hooked to a feeding tube 22 hours a day to 14-18 hours. I am so excited about that. So starting today she is going to be going to 21 hours and each week drop one more hour (if she handles it ok...it can increase the #2 diapers) until we get to 14-18. He said some kids can even handle 8-12 but that is pushing it. So for now she will have 3 hours to be a free woman.

Blood Pressure

Kylee continued to have some higher blood pressure readings so they ended up having to increase her one heart medication to help control it better which it seems to be working. I was afraid it would drop it to low but it doesn't seem to have done that. I'm happy it seemed to be a quick fix. I like it with things work really easy.

Radiothon

I did the Radiothon last week for Children's Hospital and really enjoyed it. It was so nice to answer the phone and talk to people with such big hearts willing to help others. One man from the town I live in called and gave $30 a month. He said he does it every year. It was also nice to meet other families who have similar situations. A few of the families had actually lost children and still come to help out and think they are such a wonderful place. I know we are very grateful to them and would be lost without them.

Summary of Week and Week ahead

Not too much to report for the week. Same old same old. Lots of therapy. Kylee is doing really well. She is standing in her stander for about 15 minutes a day. We are also getting a new piece of equipment called a HOPSA which will also help her with weight bearing on her legs. A lady came out from the state and said she has marshmellow feet and needs to get weight bearing on them. Eating seems to go back and forth some days she does really well and others not so much. We just keep working at it. I am kind of hoping by only feeding her 18 hours a day maybe she would be more hungry threw out the day when she is not hooked up that she will want to eat more. She also has really been doing a great job at letting you know when she likes and doesn't like something which is so nice. She is really into TV lately. The other day I had on a educational cartoon just real plan nothing to exciting and she wanted nothing to do with it. I turned on elmo that had singing and dancing and she laughed and smiled and had a blast. Then one other day I said she couldn't watch anymore TV and changed the channel and she started crying. I turned to cartoons back on to see if she would stop and she did. It is just nice to see her respond to things appropriately and letting he know when she doesn't like something. Not that it means she always gets her way but at least you know how she feels about it. Nothing to exciting for the week ahead. Just therapy and no Dr appointments until September 2nd (cardiology).

Children's Radiothon

Children's Radiothon

This week (Wednesday to Friday) is the Chilrdren's Radiothon on 95.9 Kiss Fm/105.7 WAPL and 104.9 (The Breeze). This will be our 3rd year with the Radiothon. When Kylee was 6 months old we recorded our story and they continue to play it. Our story tells about 1P36 (all though I have learned alot about it since then) and how when Kylee was 10 days old we had to do CPR on her and how I don't feel she would be here today if it weren't for Children's. All the stories they play are very touching and you can't help but cry. On Friday I will be answer phones to help raise money for Children's which all goes for a good cause.

On Thursday August 13th is Miracle Treat Day at Dairy Queen. For every Blizzard purchased that day $1.00 or more will go to Children's Miracle Network which goes to your local Children's Hospital.

Seizures

On Thursday we made another trip to Milwaukee (this was a planned one). Kylee has had a little increase in her seizure activity. She has been doing some head dropping. So they have decided to increase her Depekene medication just a little bit in hopes that will help. We also learned more information about how to use her emergency seizure medication. We are to use it if she has a seizure lasting more then 5 minutes or a cluster of seizures in one hour lasting more then 5 minutes. There probably have been a few times we should have used it as we were unaware that we should use it for a cluster in one hour. They also told us typical protocol is to call 911 after using the medication in hopes of saving us a ER visit. I laughed. Show me a town around where we live that you call 911 and the ambulance doesn't take the patient to the ER. So we have decided that the first time we use it we will call 911 but after we know how she responds to it we will keep her at home and monitor her to decide if 911 needs to be called.

Blood Pressure

We were able to get in contact with our nurse in the special needs clinic in Milwaukee and talked about the blood pressure issue. She asked me if I felt like she could have had a migraine during that time her blood pressure was high. Now that I think back to it I think she could have. She was squinting her eyes and just didn't really want to move much. Once she fell asleep and slept for a few hours she woke up and was completely fine. So a migraine makes sense. She also asked me if she had gone back to the vomiting once a day (between 8-9 pm) and I said she has. In fact she had a huge vomiting episode the night before the high blood pressure episode. She said that there is something also called a stomach migraine (she gave me a more technical term) and that kids who have dysautonomia often have migraines (both head and stomach) and that is sounds like they may be what is going on and that they can give her a medication to help prevent it (which I am also on the same medication for migraines). I asked if there was testing for dysautonomia and she said there is but they see enough children with it that they don't usually test with it. I asked if it was safe to say Kylee has it and she said she thought it was pretty safe to say but that she would check with our special needs Dr. Our nurse with the special needs clinic is a wealth of knowledge and I would be lost without her.

1P36 Conference

Last week was the 3rd annual 1P36 conference in Indiana. Each year it is in a different location and they are already talking about where the next one will be. We have yet to make it to a conference (well we just found out about them a year ago) but am hoping to some day make it there. The other parents have done a great job updating us on what was talked about. On the side I have a list of other blogs. Whitney's family did a great job updating on what they talked about as well as Alayana's blog (which has a ton of pictures of kids with 1P36 that were at the conference). I also learned from Alayana's blog that it is pronounced 1-p-3-6 not 1-p-36 so I will have to work on saying it correctly. Alayan's mom also noted that one Dr said "You are the pioneers of 1p36. You all are making a difference. The data from you will show up someday in medical books." I thought that was pretty neat to hear. It is nice to know that we will be able to hopefully make lives for other families who get this diagnosis a little easier. Kylee has also been part of a study with her cardiologist as we had done some testing on Kylee's heart in the womb and she is the first patient they have that they have been able to follow from before birth. Every time Kylee's information is printed in a medical journal she gives me a copy of it for her memory box. So all pretty exciting.

Milestones

Kylee has began to roll over again. She went thru a period after her huge weight gain that she wasn't rolling. I picked on her and said she couldn't get the big cabus over. However she has gotten it figured out and is none stop now. She also has been doing a great job with sitting. She still needs just a little support at the low of her back but she can sit alone for about 30 seconds which gives us hope that she will be able to do it. We also got a bench (thanks to Alayana's moms post about the adjustable bench) that she is tall sitting very well on and we also use it to practice tall kneeling and playing with toys. We have also been working on feeding which is getting better. she fights you to get it in but once you get it in she loves it. She gives you a big smile and does a great job working it around in her mouth and swallowing. As I learned from the information I read from the conference 1p36 kids need repetition repetition. So that is what we will do. Our PT said he is very hopeful for Kylee. She shows she has it in her we just have to keep her well enough and strong enough to meet those milestones.

Week Ahead

So the week ahead is....new orthotics on Tuesday. Wednesday we are doing a program with the state and county called every move counts. It is a few hours long and they do different things with Kylee and then we video tape her. Once we are all done we sit down together and watch the video and try to determine if any of her moves she made were "purposeful" and what we can use these purpose movements for. Like she likes to kick her leg up and done we often take that as her way of saying she liked something and wants more. So this should be a long but interesting day. Friday is the radiothon and I will be answering phones. Then next Sunday we will be celebrating Keegan's 1st Birthday. It is hard to believe he is going to be one. Time goes by so fast.

We Are Home

We Are Home

So on Friday we had an episode with Kylee as I stated below. Her blood pressure was 150/100 and she was just no acting her self. We decided to take her to the ER in New London (which we usually skip and go to Neenah) and when we go there she was 150/98. At this time she was sleeping. She slept for a while and when she woke up she was acting just like her regular self and her blood pressure was back to normal. Strangest thing ever. Our cardiologist decided to have us sent to Milwaukee so that they could monitor her for a while. We went to Milwaukee and she never had another episode. At this point no one really knows what happened to her. They are thinking she may have had a dysautonomia episode which was a diagnosis we had talked about this past winter but never have gotten a "formal diagnosis". It is mainly were her body doesn't respond to things the same as someone else. She does not produce tears and never sweets amongst other things. So for now we are chalking it up to that and just have to wait and see. Kylee always keeps us on our toes.

Just wanted to note that we got to stay in the "new" part of Children's and man was it nice. You no longer have to share a room with anyone. The rooms are huge including the bathroom. There is a little separate section for parents that has a TV, desk, double pull out sofa and then you just pull the curtain to separate yourself from Kylee's area. The Kylee's area is huge and also has it's own TV, desk, sitting area, nursing area, shelving and a safe. It is hard to explain but all I can say is it is huge and very very nice.

Week Ahead

So we just got home today from Milwaukee and have to head back down on Thursday for our neurology appointment. Kylee also has speech this week. Family reunion on Saturday and then hopefully a little "me time" on Saturday night with a good friend, good drinks and music.

Once again THANK YOU to everyone for all your help while we were gone and for all the prayers.