Our Masterpieces (or so we think)

A Great Fall Day

Our first day of vacation started with an early showing of the house at 10:00. We decided to head out to the pumpkin patch to let Kendal pick out the pumpkins. I think she was a little overwhelmed by the selection, but we managed to get two big pumpkins and a small one just for her.

When we got home, we decided to jump right in to carving out the pumpkins. Kendal was frightened of sticking her hand in the pumpkin to help clean it out. She literally was about to jump out of my lap to get away from the situation. It often takes her a while to get used to foreign things. She acted the way about playdough for 6 months before she would actually hold it and not freak out. Anyway, me and James got one large one cleaned out and then the tiny one for Kendal. James had gotten one of the pumpkin carving kits where you can do cool designs. We chose a witch standing in front of her kettle pot. It turned out so good especially when it is lit up! I did the small pumpkin for Kendal (no template required).

We had such a good time!

Vacation is Finally Here!!!

There were times when I wasn't sure if I would actually make it to vacation week. The last couple of weeks have been especially trying and I am so happy to have a week off from work.

We hope to go to a pumpkin patch over the weekend and plan on spending the first half of the week here at home. On Thursday, we plan on traveling to Indiana to visit my sister Katie, her husband Mike, and their two beautiful daughters Marilyn and Olivia. I am so looking forward to Kendal spending time with her cousins - she adores them and they adore her.

Signs and Sounds

Our little girl is learning new things everyday. I encourage anyone to look at some of the first videos I posted of her and you will see a marked difference in her vocalizations in a short amount of time. She continues to amaze us...

Getting Back to Normal

Besides the few remaining blisters that are healing, we are slowly getting back to our "normal" life. We haven't had speech therapy in 2 weeks - the first week was Suzanne's vacation and the second week was when Kendal was sick. Kendal really put on a show for Suzanne this morning using several of her signs without prompting. I am so proud of Kendal!!! In the next day or two I will post a video of some of her signs so please check back. I know everyone seems to enjoy the videos.

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After therapy this morning we headed to Vanderbilt for an appointment with Dr. Moulton (gastroenterlogist). He is an awesome doctor mainly because he is such a great communicator. When he comes in the room, he is focused on us and not anything happening across the hall. With all the doctors we have gone to, I think he is one of my favorites because he is so attentive. He is leaving Kendal's dosage on the Prevacid up to us. Of course, we want to eventually get her off the medication for reflux, but he advised us to play with lowering it at our own discretion.

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After that, we headed down to the lab for bloodwork. Kendal did really good considering they took 3 vials which seemed like it took forever. There was a mother holding her baby who couldn't have been any older than 3 months. The baby was screaming throughout the ordeal. When finished the father came and took the baby and the mother totally broke down. I felt so bad. I know what it's like to sit and listen to your baby scream in pain or fear, and not be able to do anything about it.

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Kendal went back to her daycare today and didn't seem to have any problems getting back into the routine. She loves her teachers and runs up to them to be picked up. She totally knows how to work it. She has them eating out of her hands.

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On a side note - when I was going to the doctors office this morning there was a small boy by the elevators in the parking garage leaning on his mother. As we waited for the elevator, the child continuously vomited in a bucket his mother held. It was obvious that he was a cancer patient from his bald head, very weak body, and paleness. It is always so easy for us to take things for granted. I get frustrated because parents take for granted that their children can talk to them. I needed a wake-up call that I too take for granted that my child is a healthy and happy girl. I thanked God right there for all his blessings on us. We all are so fortunate in so many ways.

A Slow Recovery

I thought Kendal was slowly on the mend but now I am having some doubts. This afternoon when I got home I took her temperature and it was back up to 101.5 - much lower than before but I thought she was done with the fever. She has had 6 doses of her antibiotic since Monday and if i don't see a marked improvement in the next 24 hours I will take her back to the doctor before I let her go into the weekend with no relief.

She is completely miserable, still unable to eat anything besides pudding/ice cream and she is not taking in much fluids. Everything appears to burn when it is put up to her mouth. I just feel so awful. I wish it would hurry up and run its course.

She has only been in the bed for 90 minutes so far and she has already woken up twice. She cried out, yelped, and moaned and then fell back asleep. This will probably be another hard night for her.

Please say a prayer for her....

Sick Again

(Hand, Foot, and Mouth Virus)

Yes, Kendal has gotten the crud again. Her fever began yesterday with the highest temperature hitting 103.8 last night. Nana watched Kendal today because Bob (boss) is off this week and I'm by myself at work. I met Kendal and Nana at the doctors office to see what was going on. Low and behold, it was....

anyone?

anyone? (was thinking of Ferris Bueller)

STREP THROAT. AGAIN!!!!
She also appears to have a coxsackie-virus in and around her mouth. She has several little blisters on her lips and blisters on the tip of her tongue. Kendal, as always, is in pretty good spirits despite the fact that the doctor said the blisters were painful. I did get her to eat Cream of Mushroom soup tonight, along with 1/2 a crescent roll, and some ice cream. Her temperature before bedtime tonight was 100.0 - hopefully with the antibiotics, she will be feeling better soon.

She is staying with Nana again tomorrow to be completely spoiled. I owe a debt of gratitude to Doris for always helping out in these situations. Thank you so much -

Another Pity Party - Will they ever end?

Kendal Chowing Down Tonight!












She's getting so big...who do you think she looks like? Me or James???

I struggled a little today in my very own little pity party. Most days are so great but every now and then I let my mind wonder and that is never good! I was listening to a child today a little older than Kendal. The child was talking up a storm and it really got me thinking. I know that Kendal is very smart but because I never hear her say anything I guess I sometimes forget that she must have all kinds of thoughts running through her head. Now, everyone that knows me knows that I like to talk (Doris, Shirley, and Teresa have the unfortunate blessing of knowing this first hand). I always feel better to get something off my chest, and I started thinking about my baby. She must have all these thoughts and feelings and can't tell anyone. Just thinking of that really hurt me. I can't imagine having so much going on in my head and not releasing it in some way. I can't get this image out of my head of a mime yelling out but no one hearing him. Is that going to be Kendal? Will she want to talk or because she has never done it, will she even know that she isn't talking like everyone else?
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I get really upset with myself that I have these pity parties occasionally. I hope I'm still just in the "grieving process". Kendal was just diagnosed the first week in March and it has been alot to swallow at times. I still have hopes for the unknown future, but I question what she will be capable of - will she be able to graduate from high school? from college? will she get married? will she live independently? I know my questions aren't different from any other parents, I guess I'm just wondering how this Angelman Syndrome will affect the rest of her life. I hope I get to the point where I do not have the pity parties or feel sorry for her. I know that she is God's child and he has much more in store for her than I can imagine.
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On a lighter note, I had Kendal in my lap tonight as she was drinking her milk and I was lightly caressing her stomach. When I would stop, she would grab my hand and start moving it. When I would start rubbing her belly again, she would then release me. I don't know why I worry so much - this child is very much in control of this household!!

The Good Life

Me and James dropped Kendal off Saturday afternoon at Nana's to go see Fireproof (see preview on right sidebar). We both enjoyed it and it was a really good look at marriage and what it should be built on. We got to drive Nana'a car and James, of course, loved it. We had a really good couple of hours away but it felt totally weird for us to be together without Kendal. She is truly so much fun - as nice as it is to get away, it sure is nice to come home and see my baby.

Dad should be coming home tonight from a mission trip to New Orleans. He has been gone since Thursday. Dad, we love you and we're proud of all you do!!

Finally Some Answers...

I finally heard back from a couple of doctors on Thursday and Friday. The neurologist called Thursday evening while I was on my way home from work. He stated that he had gotten the EEG results back and everything was perfectly fine. He said there was some slowing of the brain waves at certain times but that was completely typical in Angelman Syndrome and nothing to worry about. Also, Thursday when I got home I received my notice from the radiologists stating that my diagnostic mammogram came back normal. I was a little nervous to say the least that they had requested additional shots, but everything checked out fine. Friday morning I received a call from the genetic counselor starting that the University of Chicago can do a lab test on Kendal to determine if she has an Imprinting Defect. The rate ($450) was much, much cheaper than what we had been previously told and so I will take Kendal by the lab at Vanderbilt when we go back for a checkup to the gastroenterologist in 2 weeks. Things are finally coming together.

I looked into Kendal's medical benefits under our insurance to try determine how things will work when she is kicked off TEIS in March. After seeing the benefits, I then called the insurance company because I thought I had misunderstood what I had read. After the age of three, the insurance company will only pay 2 therapy sessions per month. Kendal is currently receiving 16 sessions a month. I, of course, freaked out as I tend to do. I had already spoken to two therapists about out-of-pocket expenses to hire them so I was somewhat able to calculate the amount per month needed to continue at least speech and occupational therapy - at least $700/month. I then proceeded to call the social worker that we had seen when we met the geneticist for the first time. I explained that I would need to hire therapists in addition to whatever the school system will provide. She asked me some questions and said she would get back with me. She called back Friday evening and said she had exhausted everything and could find no assistance due to our income. I told her earlier that we were trying to move and she advised me that when we move we probably needed to down size and change our lifestyle to provide the Kendal with the therapies she needed. That was hard to hear from a perfect stranger.

She had also told me earlier to look into social security benefits and possibly medicaid to serve as secondary insurance to help pick up the expense. I called both offices and was told that we make to much money to get any assistance. Medicaid said Kendal could possible qualify for one plan but the benefits were very small and would probably not provide any additional benefits that aren't being covered by our primary insurance.

Needless to say, we will be exploring any and every option in the next few months to ensure that Kendal continues to thrive under therapy.


On the homefront - we had a showing yesterday and the couple booked a second showing to see it again today. We will see what happens.