So Behind Again

Wow I can't believe how fast time goes by. I find myself never having time to do anything at all. I need to put somebody else in charge of Irelyn's blog. So many things have changed I don't even know where to start. Let's see she has been doing so amazing since starting her Growth Hormone Shots (GH). She is getting so strong. She got her Mic-key button out on the 7th!!! For those who don't know, that is her feeding tube. It is GONE!!! YEA!!! I never thought that would happen. What an emotional day that was for me. I cried, happy tears of course. She never took a bottle so it has been hard getting her to learn to drink from a cup. For awhile we were using a special cup that her OT ordered for her, it is called a nosey cup. That means it is open and has a little cut out part on one side. We would hold it for her and control how much milk she would get at once. Well as of November 10th, she can do a straw cup all by herself!!! She holds it and figured out how to suck. We couldn't believe it. Tears again. She learned how to suck. She never knew how to do that. :) She is getting to be such a big girl.

She is able to sit herself up from a lying down position. This also is huge for her. It took her awhile to figure that out. I think a lot of these things happened because we increased her GH at the recommendation of Dr. Miller in Florida. We went from her normal 0.4mg to 0.6mg. We started that on November 8th, and then all these positive things started happening! It is incredible. She is so close to pulling herself up on the furniture too. It is so neat to watch her do new things everyday. She is so strong.

Irelyn also became a big sister on August 4th, 2010. Yep that is right! Ryleigh Leann was born August 4th, weighing in at 7lbs 1 ounce, 18" long. She came out screaming! She is so beautiful. Her and Irelyn are 11 months apart to the day. Irelyn was born September 4th, 2009. That is so neat. Things are a little hard and stressful right now but I am sure they will be great friends. Ryleigh is a good baby other then she is a little cranky at night for some reason. This is something fairly new and hopefully it doesn't last too long. She is so adorable. I will have Jeremy put some new pictures on here as I am not responsible for that part. I am supposed to do the updating and you all see how terrible I am at that.

One of my New Years resolutions is to try and do better. I still have bad days and get very emotional and cry often. I think if I updated this more it would give me somewhat of an outlet on how I am feeling. I need to vent somewhere.

I am getting off track here. LOL! November was a great month as we were fortunate enough to get to take Irelyn to see Dr. Jennifer Miller in Gainesville Florida for the first time. She is a PWS Specialist and has over 200+ patients she manages with the syndrome. She was incredible! It was the BEST appointment Irelyn has ever had. She is the one that increased Irelyn's GH, and also started her on some supplements. One of those being L-Carnitine which has improved Irelyn's energy level greatly! We are so pleased with Dr. Miller. We are going to follow her yearly. She is an endocrinologist. Irelyn will continue seeing her endo locally, but will also see Dr. Miller. I think it is a good idea to have a multi-disciplinary team in place for Irelyn who are all very knowledgeable regarding PWS.

Irelyn has her second sleep study this week on Thursday the 16th, and I am a little worried about it just like I was the first time. She passed her first one with flying colors, no apnea, completely normal sleep study. However once they start with the GH shots, they can develop sleep apnea. So, I feel like just when things start looking up, something is going to happen. Please pray that she passes this one too and that apnea hasn't developed. We are praying that everything looks just as great as it did with the first study. Oh how can I forget, obviously since her feeding tube was removed, her last swallow study she had in November showed no aspiration. They cleared her to quit using her thickener as well! So for almost two weeks now she has been drinking her milk without any thickener!!! She is making such wonderful progress. Thank you if you made it this far to get my update on my precious girl. It says I haven't been on her for 7 months. Oops....I will try to do better. I know I say that every time, but I really am busy now with two little ones 11 months apart. LOL

Love,
Wendy and company

Small Steps

I find myself behind yet again. I hardly have time to do anything and then my laptop crashed and had to wait a couple of weeks to get a new one. I am now able to offer Irelyn rice cereal at home once a day. However I can only give her 5 bites once a day. So here we are moving at a snails pace. She really likes it and wants to eat but gets tired easily still.

We have an appointment to have her sleep study done on May 26th at KU, and once that gets done we are going to be starting Irelyn on growth hormone. I have alot of anxiety about this as many of you already know that know me. There are HUGE benefits to the treatment, but it doesn't come without risks. What does in this world? But everything is HUGE when it comes to MY children!! So my being paranoid doesn't help anything. I just pray that we are making the right decision and that she will benefit greatly from it. It involves one shot a night and will continue into adult hood. Studies have shown that it not only helps with growth, but also with overall muscle tone, strength, and IQ. It will make her stronger and have more energy to be able to play and stay awake more during feedings.

She will have a repeat swallow study in June and then hopefully we will have the go ahead to offer more by mouth. I am so ready to be done with this G-tube but I know it has been a blessing. Without she would not be able to eat enough to grow. We are still doing all of our regular therapies and will be starting speech therapy soon as well. Irelyn has made huge progress in regards to her head control. She is definitely getting stronger with that and is able to hold it up on her own with us holding her for about 5 minutes!!!! This is so exciting. She is also cooing quite a bit and rolling from her side to her back. She can't roll from her back to her stomach yet but she is trying. She can also roll from side to her tummy. We just love seeing her make these strides and she is just a beautiful baby. My two other children just adore her. Please look at the new pictures we added.

Falling Behind

Time just doesn't slow down for anything. We have had a very busy past few weeks. Jeremy got sick with a bad cold, so immediately we were trying to do everything we could to keep Irelyn from getting sick. Unfortunately we failed at doing that. Irelyn started coughing and we took her to the ER on Sunday March 7th and they did a chest x-ray and said she had Bronchiolitis and that this is a virus so they couldn't give her antibiotics. I was immediately worried about RSV but for some unknown reason they didn't test her for that. They instructed us on what to do and sent us on our way. I was really concerned with her cough and congestion. We followed with our pediatrician on Monday the 8th and she said her lungs still sounded clear so told us to keep doing what we were doing. By Wednesday the 10th Irelyn was much worse. The coughing just kept increasing and we were having to suction around the clock. Dr. Sauer decided to test Irelyn for RSV. Apparently that test is supposed to take 10-15 minutes, and it turned positive within one minute. She then made the decision to admit Irelyn to Children's Mercy South Hospital for just observation and suctioning as needed. We were extremely fortunate in the fact that Irelyn never needed oxygen during her hospital stay. The doctors were very happy about that, they told us that 90% of the babies with RSV require some sort of oxygen supplement. So they were impressed with her not needing any at all. She remained stable throughout her visit and once she was able to go 24 hours without deep suctioning she was discharged. We took her back home on March 12th and we were so thrilled and feel very fortunate and blessed that she did so well. She is continuing to do well and the cough is pretty much gone. The doctors told us due to her low muscle tone the cough could last for four to six weeks. Luckily it is about gone!

Jeremy's family came into town the next day on Saturday to spend spring break with us. We really enjoyed this time and even though Irelyn wasn't completely back to herself for the first few days, it was still a wonderful time with the family.

We had an exciting day on Sunday the 14th. Irelyn was able to go to our Church and be Baptized. It was such a beautiful sermon and the baptism went well. We are so blessed to have been able to share this event with our friends and family. Please look at the new pictures posted from that day.


The Watters

Frustration

I just need to vent my frustrations tonight. We went to dinner yesterday and I couldn't believe what happened. We had to feed her during our dinner, so we got everything ready and did our normal routine. About five minutes into her feeding, I felt like someone was staring at me from behind. I turned around to find a grown woman just staring at Irelyn and her feeding tube! I was so angry. I thought okay she hasn't seen something like this before so she was just checking it out. WRONG! She continued to stare! I finally said to my other family that was with me if they noticed anything, and they said yes. First I thought it was me, but they had noticed it too. By this point fifteen or twenty minutes had gone by. Honestly how rude can someone be. And everytime I would turn around she would look away as if I wouldn't see her. It isn't like she was a child, that would be completely different and understandable. She was a grown woman (in her 50's) with her own family, yet she couldn't quit staring at Irelyn and how she was being fed. I can't explain how much restraint it took from me to not just go off on this lady. My 9 year old daughter so it going on and was just appalled. She kept saying "Mama was she not taught that it is rude to stare", I was so frustrated. Luckily we were done eating and just waiting on our check, so we were able to get out of there. She kept staring until we left. I certainly don't understand. I would NEVER stare at someone, especially their baby, just because something wasn't what they consider to be "normal" routine. I can assure you my definition of normal is so not what it used to be. I am proud of not saying anything because I was really close to flying off the handle.

Thank you for listening to me vent! I feel a little better.

4 1/2 Months Old!!!

Well Irelyn had a big day yesterday. First she had another hip u/s to check the stability of her hips. We saw the Ortho and got good news!! She doesn't have to wear the harness that keeps her legs in the frogger position anymore! We are thrilled beyond belief about that! Now she can stretch her little legs anytime she wants too! She wore the Pavlik harness for 12 weeks for sublexed hips. Luckily they were never displaced though. The sacrifice paid off in the end and the dr said her hips look beautiful. GOD is good!

She then her swallow study which we have been waiting to have forever it feels like. Unfortunately that didn't go as we had hoped. It turns out the consistency she has been getting at OT weekly, she had penetrations and aspiration with yesterday. We were sad. They thickened it more, and she still had some difficulty but not as much. Due to these findings they will not allow us to bottle feed Irelyn at home as it is not safe for her. She will continue to get a bottle once a week at OT where they have her on a monitor, however the amount she is allowed to take in will be decreased, also to keep her safe.

I know we have to do this so she doesn't end up in the hospital, but saying I am happy with the results would be a lie. I am so sad for her. It is so unfair. She wants to take a bottle so badly and I can't let her. My biggest fear is that she will never learn to eat by mouth. That has always been my fear. However it is more pronounced now as I thought we would be able to start feeding her with thickened liquids at home by now. The longer she goes without being able to eat regularly, the harder it will be to teach her how to do it. So, today has been a bittersweet day for me. I am thrilled about the hips, but disappointed and depressed about the feedings.

On a happier note Irelyn is such a blessing! She has been cooing for over a month now and smiles constantly! She is more awake now then before. She stayed up for about 6 hours straight last night!!! WOW after the busy day she had and for her having decreased energy, that is incredible for her to do that at only 4 1/2 months old. She has brought such joy to our family and we can't wait to see what tomorrow brings.

Time Just Flies...

Wow! I can't believe that it is almost 2010! I haven't posted for over a month now, and I feel so bad about that. We have had an extremely busy month with doctors and therapy visits. First update is regarding Irelyn's hips. She had an appointment with the Ortho 12-23-09, and we found out that she is progressing nicely and is now able to have 8 hours of free time out of the brace each day! YEAH!!!! The appointment before that was 12-08-09 and they gave her 4 hours of freedom and she loved that, so you can imagine how happy she is to have 8 hours each day! She just kicks her legs and straightens them out. It is wonderful. She doesn't like going back in it though that is for sure!

The next part of exciting news for little Miss Irelyn is that she is now able to take 30 cc's (one ounce) of formula by mouth at Occupational Therapy! I know that doesn't sound like much, but it is a huge feat for her as we started out with pretty much 0 cc's by mouth two months ago! She drank that 30 cc's (the most she had ever done) on 12-22-09, what a great Christmas present! We were so very proud of her.

Today at therapy Irelyn had cereal for the first time!!! This was so neat! She was so happy to have food in her mouth. Her little tongue was just going all over the place and she really enjoyed it and did so well. Again another step to be so proud of. She is our little trooper. She will be going to Children's Mercy Hospital on January 20th, 2010 to have a swallow study done to ensure she isn't silently aspirating. Once she has that done and depending on how she does, we may be able to start offering her a bottle at home!!! I can't tell you how excited I will be if I will be able to actually feed my baby a bottle at home when she is being fed rather than 100% G-tube feedings.

She will be four months old next week and I can't believe how time just flies by. It really is kind of scary. I am trying to be in better spirits as I watch my beautiful daughter get stronger each day and accomplish huge tasks that at one point I feared she never would. Thank you all who follow us. I promise to try and update more in the new year. I wish everyone a safe and happy new year!

The Watters

Irelyn's First Thanksgiving 2009 and other updates!

I can't believe that Irelyn will be 12 weeks old tomorrow! Time is sure flying by so quickly. Today was her first Thanksgiving and it really turned out to be a nice day. We truly have a lot to be thankful for this year. Irelyn is an absolute blessing from God and our entire family adores her. She is doing very well with her weekly therapies. We have started getting therapy at home with a wonderful early intervention program through the state of Missouri called First Steps. The ladies are excellent and extremely knowledgeable in their fields and if everything goes as planned, they will both have the opportunity to work with Irelyn until she is three years old. One comes for Occupational Therapy which helps Irelyn work on her eating from a bottle and also with upper and lower body strength. She works on head control with her and does tummy time, along with different stretches. It definitely wears poor Irelyn out but the reward will be so worth it. The other lady is a Physical Therapist and she will basically whole body therapy. While she is so young it will be focused on more head control and learning how to roll over and just gaining strength. Again this makes Irelyn sleepy pretty quickly but she is getting stronger everyday.

Some other great things to update everyone on is that Irelyn still continues to go to Occupational Therapy at Children's Mercy South once weekly, and she has now increased to being able to take 20 cc's of formula by mouth for the last three visits!!! We are so excited about this, as we started out with her not being able to take any, and then she increased to 5 cc's, then 10 cc's, and now she is at 20 cc's. Although she eats much more than that at a time through her G-tube, this is still amazing progress and we are so proud of her.

Irelyn got her 2 month immunizations two weeks ago and did really well. I was really scared to have her get them. I know that they are important, however I was worried about what may go wrong. In the end she did great and is up to date on all her shots!

She is getting so big. She is starting to be awake for longer periods of time which is great. We love that. She is also smiling now and is just beautiful when she does it. Her whole little face just lights up and she gets so happy. She is also cooing now. It is great to see her interacting. Some days I get so down about her syndrome, and once she smiles at me, it makes me stop feeling sad. She is an amazing little person and we are so lucky and thankful to have her in our family.

Thank you all for following our blog. We will continue to update as things change. She has a follow-up with the Ortho Clinic on December 8th with a repeat hip ultrasound and we are hoping that we will be able to take her out of the harness for longer periods of time. We are hopeful this happens as she is so much happier when she is able to kick and stretch her legs freely. I hope everyone had a blessed Thanksgiving Day with your families.

The Watters

Frogger legs....

We took Irelyn to see the orthopaedic doctor at Children's Mercy Hospital on Tuesday October 27th to get the results of her hip ultrasound she had done on the 16th. She has developmental hip dysplasia in both hips. The surgeon said that they are not dislocated so that is a good thing. However they are subluxed, which basically means her hips are loose and need to be kept in a frogger leg position with a harness that she is wearing and will have to remain wearing for twelve weeks. Her hips are not actually dislocated or displaced therefore surgery won't be necessary. It looks fairly uncomfortable and she was pretty fussy for the first couple of days.

Irelyn continues to have OT twice a week to work on feedings. She is still only able to take 6 cc's by mouth before she tireds out. She takes 72 cc's every three hours through her Mic-Key button so she still has a long way to go in terms of oral feedings. She is getting stronger each day and we are confident that she will be able to take more and more by mouth each week.

Since Irelyn typically has three to four appointments each week we have decided that I will not be returning to my full-time job. There is no way that can happen. I am working a full-time job now at home managing all her therapies and appointments along with my two other kids schedules. Jeremy is having to work alot of extra hours and is sacrificing his time away from the family in order to make sure we can pay our bills and stay on top of things. I appreciate his willingness to do this for us without any complaints. He is wonderful and I love him deeply. While I will certainly miss my friends that I worked with and the job that I did, I am grateful to be able to stay home with Irelyn and take care of her. By not working outside of the home I am able to keep her protected from additional germs that I would have been exposed to at the hospital. She will have OT tomorrow and then she will have a much needed break for a couple of days that are appointment free! Yeah!

Thank you for reading and checking up on our precious gift from God. She is a wonderful addition to our family and we all adore and love her more than we can say. We will post when we have more news.

The Watters

Irelyn's busy week!!!!!

Sorry for the late posting. We have had a busy week! Irelyn had her follow up appointment with the surgery clinic on Tuesday with Dr. Snyder. This was a waste of time! We were literally in the room with the surgeon for like 4 minutes total!!!! I couldn't believe it. Oh well that is okay I guess! Then she had OT on Wednesday and Thursday. On Wednesday Irelyn did fantastic with her exercises on the ball. She was having tummy time to help improve her neck and head strength. The therapist couldn't believe how great she did! She did her exercises for about 20 minutes and then the OT offered her a bottle. Well that didn't go well. She was absolutely exhausted and wouldn't take one cc. We hooked up her tube feeding and decided to call it a day. Dad was able to take her to her OT Thursday while mom had a doctor appointment of her own. They decided to offer her a bottle BEFORE exercising and apparently that helped out some. However, Irelyn still was only able to take 6 cc's before tiring out and then was switched to the g-tube for completion. And finally to end our week today, she had an ultrasound done on her hips just to make sure everything looks okay. We are trying to learn all that we can each day about the syndrome and the things that go along with it. These kids are at risk for developing hip dysplasia and that is why her pediatrician wanted a baseline ultrasound done. Of course we don't know the results. We pray to God that it will be normal.

This is how most of our weeks will be for awhile to be certain we give Irelyn all the treatments and therapies that she needs to in order to do the best she can do in life! In light of this Jeremy and I have decided that I will not be returning to work full-time. Instead I am going to try and work one night a week in the ER on Jeremy's nights that he is home. We will see how this goes. Those who know me well know why I say that. :0)

October 8th

First of all happy Birthday to Wendy.
This week has brought lots of answers to our questions, but still there are unknowns.
PT is slow going as Irelyn still gets sleepy why trying to feed with the bottle. She has only taken 5cc at both sessions so far. We saw specialty care today and she increased her intake to 65cc every 3 hours. We are also going to increase by 5 cc every week for 4 weeks. We have seen good weight and length gains so far. Today she weighed 7lbs. 5 oz. was 20 1/2 long. She still is really sleepy most of the time but does have periods of staying awake. Tuesday she was awake for 3 hours straight.

Wednesday we went to KU (University of Kansas) to see Merlin Butler, he is one of the foremost experts in the world on Prader-Willi. He operates one of only 4 PWS specialty clinics in the US. The other 3 are at UCLA, Vanerbilt, and University of Florida. He sits on the board for PSW and is the editor of "the bible" of PWS. He is extremely knowledgeable about PWS and is getting us in contact with other families in the metro that have a PSW member. Our questions where asked and answered here they where.

How long will she have the g-tube?
It will depend on her as every case is different, but as a general rule about 9 months or so.
This really helped Wendy out as he reassured her that Irelyn would eat but at her pace.

Milestone at what pace?
Usually double what is normal for children.

Growth Hormones? When to start and do you recommend then?
Yes, he recommends themas they are standard of care now(even now as tx for PWS, insurance companies fight not to pay for them, it might be because they are around 40,000 a year for 18 years). As for when to start, he said we have time around 6 months to 1 year or so is what he recommends.

Should we get vaccinations?
Yes, there is no increased risk for PWS and EVERYONE in the house has to get both flu and h1n1 vaccinations.

We agreed to do further genetic testing on both mine and Wendy's part to see if Irelyn has UDP or misimprinting on my part as misimprinting can be passed on. We also agreed to do some testing of Irelyns urine to see if she has adrenal deficiency as this is a MAJOR cause of people with PWS to die prematurely. This is also needed before she is started on growth hormones.

Other important things we learned: Our congressman that represents our area had a child with PWS that died and he is a big supporter of the cause, there will be a fundraiser sometime in the spring for PWSUSA, Irelyn is doing as she should with someone with PWS, and the state rep for PWS lives in our city. We go back in a month to see Dr. Butler and thank god for him being here so close to us. He told us he sees families from all over the midwest as he has been doing this for 30 years.