Eating

Baby Food and Milk

Kylee has been doing really well in the eating department lately. I know we have a long long ways to go but it is a start. She has been eating some stage 1 and stage 2 baby food pretty well. She can eat anywhere from a couple teaspoons to a couple tablespoons. She also started taking some liquids out of a bottle. She isn't taking a lot...about 1.5 ounces but it is a start. Sometimes I just have to let it drip in her mouth and she doesn't have a good suck eat but I will take whatever I can get. She makes the sucking motion with her lips just doesn't have a strong suck. So we will just keep working on it. Practice makes perfect. We have also gotten her down to only having to be on her feeding tube for 18 hours which is so nice. Now it is time to push the luck. The Dr said to shoot for 14-18 hours but that some kids can do 12. He said it just depends on what she can tolerate.

C-diff

What can I say about C-diff...it is just no fun. I feel like the number 2 diapers never stop. We are just about done with the medicine it is still coming out in full force. I am thinking we are going to have to do another sample and probably another round of medicine. We have decided to purchase some disposable bed chucks to help save on the laundry otherwise we were having to change her sheets 1-2 times a day because when she goes it goes everywhere. We also had to clean our carpet today as she had a major mess earlier in the week and another one today.

Therapy

Kylee has been doing really good in therapy. She is still able to stand on the side of the sofa with no knee immobilizers for about 10 minutes. She is still doing good at sitting by her self we just have to increase her strength. She gets really tired out with it. Her HOPSA dress (a therapy vest hooked up to a pulley system.....I will have to take a picture of her in it and post it....she looks like she is ready for take off in it) she is doing really well in also. She can only stay in there for about 5 minutes but she is very active it in for 5 minutes. She is putting her legs down and swing herself all over the place in it which no one really thought she would do anything in it so I guess that is a big step. Her swing we haven't been using much as it is not the swing that the therapist wanted so we are in the process of trying to purchase the correct swing. The one we have is for a bigger child and not to comfortable for her.

Kylee has started to do her own therapy...she rolls her way over to the sofa...puts her legs up on the side of it and then lifts her butt off the ground. She does it over and over and over. She loves doing it. It is great to help strengthen her legs but it is soo funny how much she loves to do it.

Our PT Steve is leaving at the end of the month and we are really going to miss him. He works so well with Kylee and she has come so far but at least his time with her would have been almost over with anyway as she will be starting school soon which leads me to my next topic.......

School

So the whole school process seems to be a very long process and I feel like we have been working on it forever but I am think there should be an end in sight. I have signed all kinds of paperwork and talked to all kinds of people. We still do not have a start date yet but for sure by her 3rd birthday however we were hoping to do a slow transition starting before her 3rd birthday. We have also not decided if she will go in the morning or afternoon. She like to sleep in til 9:00 but then she takes a nap at 2:00 so really neither fits into her schedule but I guess we will have to get her on a new schedule once we find out.

I have to laugh because I am so afraid to take Kylee to the Dr to get her flu shot because of all the germs but yet I am not even thinking twice about sending her to a germ infested school.

Appointments

This week Kylee has appointments in Milwaukee on Thursday. She is getting a new feeding tube placed in the morning and then ENT follow-up in the afternoon. I think daddy (Jason) will be making the trip all on his own so that I can work. He does a wonderful job with her but it is hard for me to let go and let someone do something that I normally do and not be in on the appointments. I guess I have to let go some day :)

C-Diff Again

C-Diff

Yes...Kylee has c-diff again. I am thinking she has had it for about 2-3 weeks now and we just got it diagnosed on Saturday. She started with a lot of #2 diapers and we thought maybe we were running her feeds on her pump to fast as we were trying to shorten the time she had to be hooked up to the feeding tube. So we dropped her down and she still continued. I called the Dr and said I wanted her tested for c-diff. She sent all the paperwork over and I went and picked up the kit right away. The lab tech told me I needed 2 tablespoons of stool so it took me 5-7 days and I wasn't even close to that. It is so runny it ends up soaked in the diaper or everywhere else. So I took it in and asked if they could run it on what I had and a different then what gave me the test said we had way more then they needed. She has no idea why they would of told us we needed so much. So it came back positive yesterday and we started on the medicine yesterday. She also was starting to become dehydrated from going so much that I was worried she was going to end up in the hospital with an IV. We have such wonderful nurses that they just got her going on the pedialyte and lots of water and she was good to go.

Procedure

I was worried that with the c-diff Kylee's procedures for Monday would be cancelled but they said we are good to go. They will just put us in isolation once we get to the hospital. So on Monday we are going to Milwaukee and she is having an upper scope done with biopsies of her throat, her mass removed from her ear and a culture of her ear so we are sure to be treating the non-stop ear infection with the correct medicine and a new GJ tube (feeding tube). So it will be a busy day but hopefully we will be done with procedures for a while.

Therapy

Even with Kylee not feeling well she has been doing great when it comes to therapy. As I stated she ate a whole jar of baby food which she continues to eat pretty good. She is getting better at her sitting and she is now able to stand by the sofa with nothing on her legs but her orthotics. She kind of lays over the sofa cushion but just the fact that she is keeping her legs down is huge. Usually she gets them tucked under her butt as fast as she can. We also got some new equipment. We got an airwalker swing for in the basement. It was donated by another family. Kylee loves to swing but winter is coming and we won't be able to be outside much. We also got something called a HOSPA dress. It is kind of like a older style johnny jumper. It is a suit that goes around her body and then it is on a pulley system. This is to help her weight bear on her leg but to also teach her cause and affect. Like when she kicks her leg she spins so they want to teach her that if she does it again she will get the same response. Accidental movements become purposeful movements.

Week Ahead

So Monday is Kylee's procedures, Tuesday is speech and hopefully she does as well as last time, Wednesday we have my mother's brother's funeral and I also have to have Kylee's paperwork for school all signed by Wednesday and we have physical therapy on Wednesday. The rest of the week nothing to exciting.....just how I like it :)

**I have pictures of Kylee in her swing and standing by the sofa that I will try to post soon...we are on our way to our block party but wanted to post an update before we left otherwise time gets away from me.

Eating

Eating

Just wanted to post a quick note that Kylee ate a whole jar of number 1 baby food yesterday. We are so excited about it. She ate most of it during speech therapy and I was telling her how proud I was of her and she gave me the biggest smile ever. It just melted my heart and wanted to make our nurse cry. I love moments like that. Then she finished the jar off at supper. Small step for some but a huge step for us. I hope she continues on this path. Just wanted to share the news with everyone.

New Pictures and Appointments

Pictures

Kylee getting ready to go for a walk with her nurse.

Kylee was a ladybug for Halloween at the campground.

Kylee again getting ready to go for a walk.

Trying to get a nice picture of the kids is hard work. Guess this will have to do.

Appointments

We have had 2 important Dr appointments in the last week. We hard cardiology which we were told her heart looked really good considering how high her blood pressure has been even with the increase in her blood pressure medicine. If she continues to have high blood pressures we are going to have to increase her again. Her left side of her heart is also still leaking but is not leaking anymore then what it was back in February so she is not too considered about it at this time. So all in all a pretty good appointment. We don't have to go back to see her for 6 months and just have to continue to call with her blood pressure results.

We had her ENT appointment today in Milwaukee. He said she has a granuloma. It is basically a build up in tissue. This is the reason for her constant ear infections. The granuloma does not allow the drops to get all the way and it always is basically a breading ground for infection. We are going to use ear drops until she has her scope done on the 28th and then the ENT is going to come in and remove it and then if it still looks infected they will do a culture to make sure we are treating it with the correct medication and then they also said sometimes they have to suction out the ear so everything gets out so the ear drops get all the way in. So all in all was very happy to hear that we should be able to get rid of the ear infections soon. He also said he don't feel her tonsils and adenoids need to be taken right now. He said he feels that the risk of taking them out doesn't out weigh the benefits. He said if her snoring gets worse or she has more apnea episodes we can revisit that decision.

Therapy

Kylee has been doing pretty good in therapy lately. She is able to sit by herself for about 20-30 seconds. We have been using knee immobilizers (thanks to Alayna's mom) and she has been doing really good standing next to the sofa. She also is doing really good with helping to get dressed and undressed. She picks her head up to take her shirt off and then she often leaves it up until you put the next shirt on. Sometimes you even have to tell her it is ok to put her head down or she just keeps holding it up. She is also starting to reach out more to grab at things. All may seem like little things but are huge to us. We are also getting started again on the school process. We started last year towards the end of school and decided we would finish up when school started again and are hoping she can do a early start (October or November) and do a slow start instead of throwing her into it in December. As always enjoying every minute with Kylee and am enjoying all the changes we are seeing in her. She shows such great potential.

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.