Wednesday, December 28, 2005

Medical Fund + David Pruiksma = Amazing Friends!!

December 28, 2005 (updated info on Medical Fund)
Humbled - Speechless - Grateful - Amazed

These are some of the feelings that we experienced when David Pruiksma came to our house right before Christmas to present the "Emily Lee Medical Fund" he had set up to help us care for Emily. David, and some other friends from a smattering of my past, have worked for a few months sending out nearly 600 letters to people that have known us at some point in our lives. Your responses were absolutely overwhelming and we are incredibly blessed to have so many people in our lives that love the Lord and care so much about us! So many of our worries in all that we have been dealing with have come from our many monetary concerns and this fund will continue to ease our tension and lighten our spirits. Thank you so very, very much. When David handed me the bank statement after explaining what they had been working on I just started to cry. That is the first time I have cried since Emily was diagnosed. After a short time I told him that I felt like we were on some reality TV show like Extreme Makeover or something. AMAZING.

The Emily Lee Medical Fund is set up with Bank of America and David has expressed intention for the account to be left open for future contributions. One only has to walk into a B of A and request to donate to the "Emily Lee Medical Fund" or click on the "Make a Donation" icon on Emily's Page... and it is tax deductable!

As I have said before, God is good!

Friday, December 23, 2005

Family Update 2005

December 23, 2005

Dear Family and Friends,

Merry Christmas and Happy New Year!! We pray this letter finds you well! We realized that many of you have not had updates on our lives over the past couple of years, so we wanted to take the opportunity to fix that...

We have been living in the Washington, DC area (Maryland & Virginia) since April 2004 and parts of the area seem to be growing on us. Maybe our age, a whopping 25 & 27, has brought with it a sense of nostalgia for what has become familiar to us here, but nevertheless we have mixed feelings about moving again. Some days we want to pack-up and head to the moon and then the next we are content to never have to pack-up again. Desires can be so deceiving!

God has continued to take us on our journey through death and life and we are grateful in many things. We are also not grateful in many things, but that is why God is taking us through it I guess. Lucky for us we will one day see God's perfection in its fullness and our aforementioned deceiving desires will be of no concern. What a wonderful day that will be!

Here's what is going on individually:
Nathaniel - working, reading, dreaming of the mountains
Diana - Taking care of the kids, cooking, reading, dreaming of our next adventure... she is what keeps us going every day
Annabelle - running, coloring, gymnastics, talking, helping with Emily, talking, running, coloring, talking... she is great
Emily - despite recovering from a nasty cough -- eating mushy baby food, baby-talking, laughing, wiggling, giggling... she is a blessing

We are blessed to be in close proximity to Nathaniel's parents, and they have been very helpful and loving. Most of Diana's family is a hop, skip, and a jump away as well, so it has been nice to spend time with them and Annabelle loves having “sleep-overs” with them. We also have some great friends Emman and Jade Chapman that have recently had their first baby... a boy! Emman and Jade would be the first to tell you that they have been blessed by helping us in all the ways we do, but we would have a hard time existing in the splendor we do without the Chapman's. Our church has been incredible as well, helping us handle our many needs with a style that all of God's people should witness.

On a different note - although we expect Emily to recover from this first of many expected illnesses, please continue to pray for her happiness whether it be through strength of muscles or spirit. Please continue to pray for our strength as well. We need patience, kindness, love, grace... you name it, we need it. God is good all the time, but we are not.

Please visit our website ( ) often to check-up on our updates. We try to leave updates on Emily's site as much as possible.

A recent interaction with Annabelle –

Nate: Annabelle, the reason you are sitting by yourself at the dinner table is because you are taking so long to eat.
Annabelle: But daddy, I want someone to sit with me.
Nate: Jesus is sitting with you, Annabelle.
Annabelle: No he's not!
Nate: Yes he is, he's always with you.
Annabelle: But daddy, I want people… God is just a Spirit!!

Well, have a great holiday season and spend it well... with the ones you love!

Nathaniel, Diana, Annabelle, & Emily

Saturday, December 10, 2005

Sickness #1

December 10, 2005
Emily is getting sick! - We have been battling a horrible cough in our home for a couple of weeks and praying that Emily would not catch it, but it seems as though she has.

What does this mean?
- The cough is pretty rough and seemingly incessant at times. Emily still has the ability to cough, but coughing all the time is exhausting, in case you didn't know. We are going to have to decide whether or not a hospital visit is in our near future. The problem with hospitals and SMA kids is that, as a parent, you are (almost) ALWAYS arguing with the hospital staff. That is how fun it is on top of having to go b/c your child isn't breathing or something horrible in the first place. They'll want to take all sorts of blood samples that they don't really need b/c it is in the standard protocol book on the shelf and we will have to get ugly in order for them to not do all that unnecessary stuff.. it's the one thing that remains constant in all of this.. frustration at the hospital. We do not want to go if we can help it. Our Pediatrician, Dr. Dudas, is great and will do what he can without having us go in.

What's next?
- If we felt that Emily's lungs were collapsing as a result of a secretion build-up or whatever, we would want to have an X-ray taken to be sure, so we would need to take her to the hospital. Also, we have almost everything we need to give her respiratory care, but if we found that we were short some piece of equipment that we wanted to use, we would probably take her in.

Please continue to, or start, praying for us in this.. for strength and clarity of though. There is ALWAYS that chance that Emily will just stop breathing b/c of some airway blockage.. that is the reality of the situation. There are heroic efforts that we can take, but how far can sometimes only be determined at the crux of the event. We have some plans in place, but they are "subject to change."

Friday, December 09, 2005

Caleb Isaac Chapman

December 9, 2005
HURAY!! Our good friends Emman and Jade had their first baby early this morning!!! Caleb Isaac was born at 0606 weighing 7lbs 3oz and totaling 18.5" in length. They are doing well and resting up for the big new adventure. Congrats and blessings to them!!

Tuesday, December 06, 2005

Recap + Life + Play

December 6, 2005
Our trip to SLC went very well and it was great to re-visit the people who have helped us so much through the last two years. Emily has shown some improvement in her muscular and neuromuscular abilities and everyone was very pleased with her progress. There are two sides to the story. It is great to see Emily doing things that Linnea never could. She kicks her legs and moves her arms around like a conductor prompting an orchestra. She stretches and smiles and screams and giggles... just like a "normal" baby, but still weaker. She has got to be the most interactive little 4.5 month old you have ever seen. But, even with all this I fear the inevitable even more. If things continue as they seem, Emily will still outgrow her abilities and start to weaken once again, only this time it will be at a later age than it was for Linnea. That means that Emily will be that much more aware of her own deterioration and difficulties. I cannot imagine what it must feel like to lose normal abilities when you don't even really know what is going on in the first place. It must be scary.. makes the job of a parent seem all that more important, don't you think?! To validate their kids existence and making them feel as secure as can be every moment of every day. Emily knows we love her because we are always talking to her and playing with her. She responds to us and we respond to her, it's a wonderful relationship if you think about it. But it is tiring too. I mean, most kids learn to bring joy to themselves soon enough. Rolling around and tasting everything they can get their hands on. Crawling around and touching everything they can get their hands on. And then finally pulling up and touching anything they can get their hands on. I can see it in Emily's eyes that she wants to get to something and "get her hands on it," or stick it in her mouth, only she cannot do it on her own.. we do it for her. It just gets tiring and it always feels like a selfish thing to be tired of doing something for another person. Shouldn't we always be happy and energetic to do things for people, and especially babies, who cannot do it for themselves. It is a frustrating emotion to battle with. Sometimes you just have to be selfish, but you can't in the end. Parenting, that is what it is all about I guess.. never throwing in the towel. I challenge all of you to never throw in the towel b/c the reward is to great to throw to the wayside. We have had one SMA-free child and she is a wonder to behold. Tireless and forgiving with no lack of intelligence where it counts she makes our lives exciting day in and day out. I wish I had the stick-to-itness in life that Annabelle has in play.