Wednesday, January 30, 2008

Thursday Update

Just a quick update on how things are going here.

Tuesday we went to the eye doctor for the first time since he saw Ellie in the hospital. We really had no concern about her sight, but I was still really nervous to hear what he had to say. After all, I had thought that she was hearing and was wrong about that!

While we were waiting to see the doctor, and let me tell you, we waited a long time, I worked myself up deciding he was going to tell us that Ellie was blind and would be a vegetable for the rest of her life. But, the first thing that he did say was "I can tell you that she sees perfectly fine" and I nearly burst into tears. He actually said that despite her severe hypotonia in the rest of her body, her eyes move quite well and seem pretty normal!

The rest of the appointment was quite interesting, as he appeared to be quite interested in getting Ellie a diagnosis. He has seen a lot of people with neuromuscular disorders, so he had some insights as to how the eyes relate to those disorders. He first thought we were dealing with a rare disorder called Mobius, but then said that he had never seen a case where they had lateral eye movement, which Ellie does very well. Then he mentioned the muscular dystrophy diseases, though they tend to have cataracts, which Ellie does not. He was able to look deep into Ellie's eye and see her cranial nerves, (which we thought was really cool), and he thought there might be something going on with her "gray matter" of her brain, so he thought another MRI was needed.

Now that I have thoroughly confused both you with all these diseases, I will sum it up to say that he really wants to pursue more testing, both in the form of another MRI, and possibly going to another hospital, the Cleveland Clinic, to do more tests.

I had mixed feelings after he mentioned more testing at another hospital: first, anger that no other doctors had even mentioned that there were more tests and specialists out there that might be able to help Ellie. I also started to worry about invasive tests and possible negative diagnoses. But then I also started to get excited that we may someday know what is wrong with Ellie and be able to find more effective ways to help her and also plan for the future.

Ellie is having a great week. Starting Saturday, after I posted that she was so sleepy again, she started to have great awake periods during the day. In fact, she is awake for most of the day except for a few naps. It has been really exciting, and I am feeling better because of it. Thank you for your prayers.

We received some of the money from Adam's cousin Jen for the fundraiser. We are so overwhelmed and thankful for this blessing! Thank you all so much for your support and love of Ellie. You are making a difference in her life! Praise God for his blessings!


Thursday, January 24, 2008


Yesterday Ellie went to get fitted for hearing aids at a hearing clinic. Adam tells me that they will take about a month to get ready and that they will be pink. We are to put them on her while she is awake, and the hearing tech said that with hearing loss like Ellie's, the child usually ends up being able to hear at least a little. It is exciting to think that she will be able to hear our voices and the boy's craziness. We pray that it will help her to be more alert and focused.

Otherwise there is nothing new around here. It has been a difficult week for me because Ellie was sleeping a lot, and I just mourn the time I am missing with her. It is very difficult for me to just act like a nurse and have no real interaction with her because she is always asleep. Things have been a little better since her CST therapy on Wednesday, and she has had some good awake periods after that.

Here is an update from Adam regarding his dad. Thank you for your extra prayers for him during this time.

After several tests the doctors determined that my dad did end up having a small stroke this last Sunday. As of today he has all of his memory back except for the events of this last Sunday which he will likely never remember. In the process of doing tests they found that he has a defect in his heart which is described as having two pace makers. Basically he has two wires instead of one for maintaining heart rhythm and sometimes they are not coordinated and cause the heart to pump incorrectly. The doctors believe that this condition contributed to a blood clot that went up into his brain and caused the stroke in the area of his brain that supports short term memory. He is still in the hospital suffering from headaches and ringing in his ears due to a spinal tap that was done to him while there. He ended up loosing large amounts of spinal fluid and will need to be on bed rest for a little while in order to heal.
We can be thankful that the damage to my Dad's brain was not severe.

Monday, January 21, 2008

Family Updates

Hello everyone. A quick update on how things are going around here.

The card fundraiser was a big success. A huge thank you to Jen and everyone who participated. Jen said she is still willing to make cards for anyone who would still like to order some. More info is on her website.

The big news is that Ellie is still healthy! We have made it through a few months of winter without any sickness, and for that we praise God. It is our main goal right now, at the expense of large gatherings, church, and other fun events, to keep the family healthy this winter. We think it will make a huge difference in Ellie's life if she can remain strong here at home.

Second, Ellie is continuing to improve the movement in her mouth. She is starting to pucker a lot more, and has even made coordinated efforts toward sucking. Adam has even put a syringe of water in her mouth and she has swallowed up to 5 ml at a time! We took this short video to illustrate what she is accomplishing:

Finally, a prayer request. We got a call last night that Adam's dad is in the hospital with some memory loss. They are doing testing right now, but it is a scary time for his family as they wonder what could be wrong. Please pray that it is just a minor issue that will be resolved quickly.

Tuesday, January 15, 2008

Card-A-Thon Fundraiser on 1/19/08

Make or buy cards and support Ellie in the process!

This Saturday my cousin Jen is holding a fundraiser to help pay for Ellie's therapies. Jen has a stamping and scrapping business and will be donating $1 to Ellie for each card made on Saturday 1/19. If you live in the New Jersey area you can stop by her studio and make as many cards as you would like!

But wait, just because you don't live in NJ doesn't mean you can't participate in the fundraiser. You can also put in an order for cards to be made during the fundraiser on your behalf, and $1 per card will still go towards Ellie.

Follow this link below for more details, an order form, and Jen's email address: Card-A-Thon

We hope that many of you will turn out and that the fundraiser will be a huge success!


Friday, January 11, 2008

Ellie Update

We had three appointments this week. First, Ellie saw the craniosacral therapist. There is nothing new or exciting to report on that front. Adam was happy that the appointment was a little bit shorter, showing that Ellie has made progress in that it takes less time to do her releases.

Next we saw the developmental pediatrician. They are the clinic that will follow Ellie and kind of coordinate all of her doctors and therapies. They will be the ones that will make sure she is getting the care she needs. First, they evaluated Ellie's weight and diet. Ellie now weighs 10 lb 11 oz. They are increasing her feeds at a faster pace to see if she will grow at a little faster rate. They have also ordered up another physical therapist to visit our house weekly. They are not sure if insurance will cover it, but they are going to try so that Ellie may be able to progress a little faster.

Today we met with a new pediatrician that we like very much. She will take over the care of Ellie now. We are excited to find someone that understands our concerns about Ellie.
Prayers and Praises:
-that Ellie has been healthy since she has been home
-thanksgiving for an unexpected monetary gift that will help us continue her therapies
-Ellie's continued improvement

-strength for the whole family to make it through each day
-protection from the colds and flu that is going around
-that Ellie will be able to hold up her own head soon


I've had a few questions about the "product placement" on this blog:
  • Ellie's cute kimonos are from Babysoy and from Kate Quinn Organics. The best price for Babysoy is at Babycenter; there are always deals with free shipping or coupon codes. You can find Kate Quinn organics at lots of stores. I always look around for a coupon code ;)
  • Ellie wears cloth diapers from Motherease. Her diaper covers were knit by a friend :)
  • Wednesday, January 9, 2008

    Tummy Time

    Our big goal and prayer right now is that Ellie would learn to hold her head up. Once she does that, we can start working on other motor skills. It would open up the options for different carrying positions and other stimulation too.

    Here is Ellie practicing during tummy time. It may not look like much, but we are so excited to see her try to lift her head! Praise God for her progress!

    Tuesday, January 8, 2008

    Medical supplies

    I thought this was a funny sight: Ellie got her medical supplies delivered for the month. This is all for ONE MONTH! Now you can see why we had to upgrade to the largest trash can ;)

    In other news, Ellie returns to her craniosacral therapist tomorrow morning. We are eager to hear what he says, both about Ellie's progress and about future therapies. On Thursday, she sees the developmental pediatrician, which should also be quite interesting. We expect to hear a bit more about Ellie's progress and future there.

    Couldn't post without a picture of Ellie: chilling out in her chair while we do school.

    peace to all-

    Sunday, January 6, 2008

    Another Video

    Here is a video of Ellie watching her rainforest light-up toy (thanks aunties and uncle!). At the end, Noah is playing nearby and keeps kicking her. You will see that she can kick back!

    Wednesday, January 2, 2008

    Ellie Update

    Happy New Year! We had a great time visiting with old friends and also with lots of family over the holidays.

    Here is a video that Adam took during one of Ellie's awake periods.

    As you can see, she is quite alert and aware of her surroundings. She used to have a hard time focusing on us but now will hold a stare and seems to comprehend what is going on. She has many more awake periods now. During the day, she will often be awake for 10 or 15 minutes, while we change her diaper or do her care. She will startle awake if we transfer her to someone else's arms or to a new position. She tends to go back to sleep within a few minutes though.

    Then she has more alert awake periods a few times a day. Today she was awake for probably an hour and a half after lunch. She then slept for a couple of hours and awoke at 5 and will probably be awake for several hours this evening.

    This is such a huge change over us trying to tickle her and stroke her feet to get her to wake up when she first came home. Nothing we did could get her to wake up then!

    Ellie has been continuing to grow and is eating a lot. She weighs between 10 and 11 pounds now, and eats 3 ounces at a feeding. She has been quite healthy since her first little cold the week she came home. What a blessing and gift from God! The doctors told us we would probably see them for pneumonia within a month! We are keeping her home as much as possible and everyone has been very considerate about keeping their distance when they are sick.

    A new thing that we have noticed (but can't prove) is that Ellie has started to swallow. We can see her close her jaw and hear a gulping-type noise. She has a lot less secretions in her mouth as well. If this is true, it will truly be the beginning of a miracle.

    We continue to think about (and worry about) the future and what it holds for Ellie and our family. We just don't know what will happen, but we can already see the hand of God working in our lives and know that he will care for us whatever may come.