Thursday, May 1, 2008 by admin.

02:40 PM, CDT

April Update:

Sarah had an okay April. She battled an ear infection, but did not have to go to the hospital. Praise the Lord! . As of May 1 she is now under the REM (Rare and Expensive Medical) insurance program, so hopefully by the end of the year she will have the medical equipment she so badly needs. She continues to amaze us everyday. She has been showing interest in potty training:) She also sorted objects with her therapists the other day. It doesn’t seem like a big deal until you think about the fact that she can’t grab things or let go of them once she gets them. So she uses facial expressions and eye gazing.

She has her monthly Johns Hopkins check up next week. We are hoping to see some growth. Her last visit showed very little growth in height and weight loss. So they increased her formula quite a bit. When I see her with children her own age, I realize how small she really is. I think it is a blessing, though, since I have to carry her quite a bit.

We are still looking for a house. If we find something we like, there is usually one thing we can’t live with. Usually it is a bathroom that is too small with nowhere for it to grow to accomodate a wheelchair. I hope we can find a house before next school year.

I hope everyone is enjoying the spring. I know Sarah Grace and her sisters are glad to be spending more time outside. Summer will be here before we know it. God bless you all and thank you for the continued prayers.

:)Dena

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Wednesday, March 19, 2008 by admin.

07:29 PM, CDT

Sarah is home. We came home today after 2 days of no fever and several tolerated tube feeds. It’s amazing that we made it through most of the winter without her geting sick. Thank you Dear Lord! She still has a bad cough, but is her usual playful self otherwise. Thank you to everyone for your thoughts and prayers. Have a most blessed Easter!

He is Risen Indeed! Alleluia! :)Dena

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Wednesday, December 19, 2007 by admin.

08:00 AM, CST

Sarah has spent most of the last week in the hospital. She went in early in the week last week, was home for 48 hours, was not getting better and was back in the hospital by the end of the week. As it turns out, she has RSV and a urinary tract and ear infections. She is now home with no fever and tolerating tube feedings.

While in the hospital, they performed a renal ultrasound to make sure there is no anatomical reason for such a young girl to have a urinary tract infection. In January they are running another test to check if she has a urinary reflux problem.

I hope you all have a blessed christmas and a Happy And Healthy New Year!!

:)Dena

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Saturday, September 22, 2007 by admin.

07:58 AM, CDT

Sarah was discharged last night and we were able to make it home for the end of Kaitlyn’s Family Fun Friday. The docs were going to have her stay another night, but that would mean moving her to another floor in the hospital. They didn’t want to risk her having additional exposure.

So she will be on motrin today. We will be monitoring her carefully for fever. While in the hospital she developed a rash and they believe she has a virus. She had been on antibiotics until Thursday for a skin infection.

Thank you for praying for Sarah’s health. She is a precious gift from God. Don’t forget Kaitlyn and Hope in your prayers. It has been very stressful for them to start a new school and deal with Sarah’s illnesses. I am thankful for a loving family who is there for Kate and Hope when I am with Sarah in the Hospital.

God’s Blessings to you all,

Dena

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Friday, June 1, 2007 by admin.

08:38 PM, EDT

An Adeno virus had Sarah in the hospital for a week last week. She came home on Monday after running a fever for 6 days. It was a long week, but we managed her viral infection well and there was no crisis. She still has quite a cough. We went back to JH on Wednesday for her regular monthly appointment. They have added more calories to her diet and extra fluids for the summer. We also saw a GI doc to have her Mic-Key placed. So now instead of an 8 inch long tube hanging out of her tummy, she has a “button” up against her skin.

We are praying that the viral season is over and we can have a calm summer. The girls and I are moving in with my sister and her family next week. So this week coming up will be busy with packing. Our house is still on the market and we hope someone will want it soon.

Kaitlyn and Hope are taking all of this well. They are looking forward to being with their cousins (especially since they have a pool). We are looking into sending Kaitlyn to school next year so she can have more consistency. She has been homeschooled for the past two years. Hope will be going to preschool.

As you can tell we have a lot going on. I am thankful for all the people that have helped these last few months. Those that have watched Kate and Hope - Grandma and Granddad, Aunt Theresa and Uncle Doug, Aunt Leann and Uncle Aaron, Poppy and anyone I have forgotten. Thanks to those who have helped in so many other ways: Chris and Linda for your endless support, the Dancers in South Carolina for their generosity, and everyone who has every utter a prayer on behalf of my family.

God Bless Every One of You!

Dena

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Thursday, May 10, 2007 by admin.

08:37 PM, EDT

Sarah is doing well after spending two nights in the hospital last week. She had the sniffles on Tuesday, May 2 and had a slight fever that evening (100). When I called the genetics doc on call at Johns Hopkins, she told me to give her motrin and her continuous feed that night since Sarah had an 8 am appointment the next morning.

Wednesday, with a stuffy nose and slight cough, but no fever, Sarah, Kaitlyn and I went to JH to see her doc and dietian. The nurse was able to get her statistics and blood and urine before the doc arrived. As soon as the doc got there and found out Sarah wasn’t well, she decided to admit her. My sister came to pick up Katie Bug (thanks Leann!!) and Sarah and I got “comfortable” in our home away from home. We now know many of the nurses by name and they know us. She was kept on iv and extra feeds of no protien formula. We were able to go home on Friday:). She still has a stuffy nose and cough, but mostly at night and early in the morning. Basically she has head cold (she is too young for allergies, I’m told).

On a brighter note, her growth this last month was fantastic — 160% of what was expected in both height and weight! She is becoming a regular chunker. I hope we can get some newer pics on the website soon. Leann, you’ll have to show me how.

Thanks for all the prayers. Right now we are selling our house so we can move closer to Baltimore and Sarah’s specialists. Please pray for a quick sell and smooth move.

:)Dena

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Wednesday, April 18, 2007 by admin.

08:37 PM, EDT

Sarah had another stay at Johns Hopkins due to fever and vomiting. She had her nine month vaccinations on Wednesday (4/11) and developed a fever of about 101.2 on Thursday afternoon, even though she was on Motrin. We called Johns Hopkins and was told to give her more Motrin and watch her for an hour and the doctor would call back to see how she was doing. Well, I gave her the Motrin, took her off her dinnertime g-tube feeding and began to administer her meds when she vomited everything out. So we called JH back and they told us to go to the hospital. We went to the local hospital, the doc from JH called ahead so they were ready for us, and we were seen right away. They got blood tests and an IV started right away and we waited for the ambulance to arrive. They also gave her Tylenol and by the time the ambulance arrived, her fever was down to normal.

We hopped into the ambulance, me in the front with the driver so I wouldn’t get into the way in the back. We were not even out of town when the nurse had the driver pull over so I could get in the back. Poor Sarah was so upset, but when she saw me she took my hand and fell fast asleep.

Her stay was an up and down ride this time. Just when we would think she was getting better, she would get a fever and begin vomiting again. We came home yesterday after she had been without fever for over 24 hours. We also had to watch her white blood count which had gotten low. It is my understanding that people with metabolic disorders can have a low white blood count because the toxins that build up in their blood can effect the bone marrow’s production of the blood.

They think that she had a reaction to the vaccination and then a gastro-intestinal bug coinsided with that. She is home now and doing well, although with every stay in the hospital (this was her 6th in 5 months) she has a period of adjustment to being back home.

I believe that Sarah is doing so well because God has blessed us with family and friends that pray for Sarah and our family. He has also provided doctors and nurses that truely care for the well being of their patients. My prayer is that we can alway do what is right for Sarah and that she will grow to know she has a loving Father who made her and loves her very much.

:)Dena

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Saturday, March 10, 2007 by admin.

08:35 PM, EST

Hello, We met with Sarah’s nurse and a neurogenetisis yesterday. With the weight she has gained the past 2 weeks, she has completely caught up to were she should be. Since December she has grown much less than expected. Now that she has been getting about 2/3 of her needed intake from her tube she has had a real boost: Just under 15 pounds before surgery, just over 17 pounds two weeks later. Praise the Lord for modern medicine. Sarah is really thriving. The doctor examined Sarah and then gave us some news that although it did not surprise me, was still hard to hear. Due to the damage done to Sarah’s brain in December, she has Cerebral Palsy. Because of her age, there is no way of knowing how severe it will be. Only time will tell. We will be setting up appointments with Kennedy Krieger if our insurance allows. At this point we pray that we can avoid any further crisis and keep Sarah as well as possible. Her iv port and feeding tube are truly a blessing. My sister had put together a website for Sarah. She had done a really nice job. Please visit www.sarahgrace.name (changed to www.sarahgracehasga1.com). She has done a lot the past few days and it is still evolving so check it out often. Thanks, Leann. Love, Dena

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Monday, March 5, 2007 by admin.

08:34 PM, EST

Hello Everyone, Well, Sarah had her surgery on Feb. 23. She did well with the procedure. The 1^st night she was only on iv, the 2^nd night they fed her through her tube, but it was too much too fast and she vomited. So that meant another night in the hospital. We came home on Tuesday after 2 nights of tolerated feedings. We were home for Wednesday and Thursday. Friday she developed a fever, so it was back to Johns Hopkins. She was put on iv right away (Praise the Lord for her new iv port, only one stick!!!!!). She still has a stuffy nose and a cough, but was sent home today. We will be keeping her on continuous feed 20 hours a day until her virus is gone then once she is better, only 8 hours at night. The feeds at night are to get her back on a growing trend. She has already gained 1.15 lbs in the week and 3 days since her surgery. Considering she was losing weight, I’d say this is progress. Dena

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Friday, February 9, 2007 by admin.

08:33 PM, EST

Hello Everyone, Sarah had her MRI today. We will not have any of the results back until next week. They had to sedate her, but she did well (and Mom and dad survived too) We also met with her doctor. We have determined that she is not eating enough, although we do not think it is a swallowing issue. She has grown this past month, but lost 15grams in weight. So, we have decided to go ahead with the iv port and the g tube. She will probably have these procedures within the next 4 weeks. Thanks to all of you for your prayers and thoughts. God Bless, Dena

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