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.