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 ( www.the-lee-family.us ) 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!

Blessings,
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.

Wednesday, November 23, 2005

Going to UT

November 23, 2005
Monday will mark the beginning of our next adventure to the West for the clinical trial! Mercy Medical has donated that miles needed for me to fly out as well and it is so great that we will be able to be together again on these trips. Emily has shown a great deal of "improvement" as she started making movements she had stopped not long after she was born. She is able to move her hands to her face VERY well and she even can bow her back a little when she wants to look at something out of her view. She is as LOUD as ever and keeps us on our toes. The medicine she is getting will not save her from the effects of SMA, but it looks like it is helping her maintain some strength she would have otherwise lost for ever. We'll will see where this takes us.

Friday, November 04, 2005

Recovery

November 4, 2005
All is well and surgery is over. Emily is recovering well and we are now back in our own home. We will do our best to feed Emily by mouth for as long as we can, but supplemental feeds, medicine, and other nutrition will be fed via her G-tube. This will greatly enhance our ability to care for in many ways.
Our next event will be taking place at the end of Nov when we make another trip west for our next visit for the clinical trial. Thank you for your prayers and words of encouragement!!

Sunday, October 30, 2005

Surgery

October 30, 2005
Well, we are ready for our trip to Philadelphia. Besides a vehicle set-back after our van, I, rear-ended a small car on a nearby Parkway that is continually congested with senseless commuting traffic.
We are incredibly blessed everywhere God puts us and this place is no exception. Some incredible friends gave us their minivan to use for the week while they get ours fixed. We are forever grateful to the friends God has given us!!
I'll write another update after we return.

Thursday, October 13, 2005

Plans

October 13, 2005
Since Emily was diagnosed with SMA on August 26 we have been planning how we are going to approach her care. You see, every SMA baby is different in how they react to the sometimes very irritating therapies and treatments. Linnea was very tolerant of the treatments and seemed so content no matter what was going on. Emily has already shown us a great deal of frustration with her failing ability to move like she seems to want to.. like we all want to. When we take her out of her car seat and pull on her arms a little, as if she were stretching, she gets that funny pleased look on her face. The kind you'd see yourself making if you could see your first stretch of the day. Pure bliss! She cannot do it on her own, so we do our best to help her stretch when she looks like she needs it.

Our latest struggle has been to find a team of doctors to perform a Gtube/Nissan surgery on Emily. The Gtube, feeding tube, will allow us to continue feeding Emily because her swallowing ability is failing fast. The Gtube will also allow us to vent Emily's stomach when we use the cough assist machine which helps us maintain her pulmonary health to a degree. The Nissan fundoplication is a surgical wrap around the top sphincter muscle of the stomach that helps prevent potential reflux problems. If an SMA child refluxes they are at high risk to aspirate and die quickly. Although there is some argument about whether or not the Nissan is necessary in SMA kids, we, along with most doctors familiar with SMA, feel that the risks are too great to not get a Nissan along with the Gtube. This has caused some problems in getting the care we feel is best for our family and disagreeable and/or unfamiliar doctors have forced us to look as far as Utah for the care we want. Fortunately, we were blessed to find a team of doctors in Philadelphia that agree with us and we are scheduled for surgery on November 1!! That is a HUGE answer to prayer.

The other update is that we have been participating in a clinical trial with Dr. Swoboda in Salt Lake City, UT that involves infrequent visits to UT, and four doses a day of some pretty foul tasting medicine. We visited the hospital in SLC in early September and underwent some recording and sampling of Emily's abilities, blood, and neurological activity. We also offered our own blood for future testing. SMA I is caused by the absence of the gene that is responsible for stimulating the body's voluntary muscles i.e. leg, arm, neck, facial, lung, muscles.. etc.. The medicine we are trying helps stimulate the backup genes that have proven to not do their job very well. There has been a great deal of success with SMA II kids and we have seen some, be it minimal, improvement or maintenance with Emily's muscular abilities, but not enough to deal with her rate of growth. We are participating in this trial for the sake of future medical breakthroughs.

Well that is a long update, but I wanted to get some of that out of the way. Please pray that Emily's surgery will go well and that I will find a new employer soon so we can buy a home in the area. This will allow us to take care of Emily much more effectively b/c the electricity goes out in our present rented home quite often. More to come...

Saturday, October 08, 2005

The First of Many

October 8, 2005
This will be the first entry for updates about Emily Hope Lee and our adventures with her. Emily has been diagnosed with Spinal Muscular Atrophy and we do not know how long she will live. This is very difficult.

Friday, October 07, 2005

About Emily Hope Lee






"We are confident that as you share in our sufferings, you will also share in the comfort God gives us." (2 Cor 1:7)

Hi, my name is Emily Hope and I have Spinal Muscular Atrophy (SMA), Type I. SMA is a neuromuscular disease which not only weakens the muscles that help me move, but those needed for breathing, swallowing and clearing my airway. I am not able to sit or stand and my arms are very weak, so my family helps me have fun by taking me on walks in my wheelchair and helping me play with my toys. I live with my Mommy, Daddy, big sister, and Aunt. I also have nurses that come and help take care of me. Every day they give me multiple medical treatments to keep me healthy, so I don’t have to go to the hospital. I love watching Dora and Veggie Tales, swinging, and playing with my family. They have to help me with all of that, but they enjoy it too!!

When I was diagnosed at only 5 weeks old the doctors told my parents that I would probably die before I turned two, like my older sister Linnea who died when she was only one year old. But, now I am four and half years old much older!! My parents have had to work very hard to keep me healthy, but they love me so much and do everything they can to give me the great life that I have. My doctor visits and medical equipment are very expensive, so they have a lot ot think about as they care for me.

SMA is one of the most prevalent genetic disorders:
  • One in every 6,000 babies is born with SMA. Of children diagnosed before age two, 50% will die before their second birthday.
  • SMA can strike anyone of any age, race or gender.
  • One in every 40 people carries the gene that causes SMA. The child of two carriers has a one in four chance of developing SMA.

Links

Here are a few web sites you may find additional support through

  • SMASpace - SMASpace is a social networking site provided by Eminnea Inc. for families, caregivers, and organizations battling SMA.
  • Eminnea, Inc. - dedicated to helping you connect with local and internet-based resources that will help you on your journey with SMA
  • Dr. Kathy Swoboda - Expert on SMA and selfless advisor to many, many families.
  • Gwendolyn Strong Foundation - GSF seeks to raise awareness about and fund research for SMA
  • Families of SMA - Families of SMA was founded in 1984 for the purpose of raising funds to promote research to find a cure for Spinal Muscular Atrophy, and to support families affected by SMA.
  • FightSMA - An international nonprofit organization dedicated to finding a treatment or cure for spinal muscular atrophy (SMA), the leading inherited killer of children under two.
  • SMASupport - Dedicated to providing information and support to family, friends, individuals and caregivers on all aspects regarding the devastating genetic disease called Spinal Muscular Atrophy.
  • Addy's Adaptations - Addy’s Adaptations, Inc. is a non-profit organization that was started to provide additional avenues of help and hope for families who are dealing with SMA.
  • Kyle and Friends - Kyle and Friends is dedicated to spreading awareness about Spinal Muscular Atrophy, giving newly diagnosed families the most up to date information, and raising money for a cure.
  • B4SMA - Our sole purpose is to provide love and blanket hugs to SMA children and their families. B4SMA was founded in March 2004 by MJ Purk and Brenda Hanson.

Encouraged Reading:

Linnea Grace Lee

On September 21, 2004, our second-born daughter Linnea passed away from the affects of SMA. We miss her each and every day, but thank the Lord for the time we had with her. Follow the link to read our story about her beautiful life.

About SMA

About SMA:

  • One in every 6,000 babies is born with SMA. Of children diagnosed before age two, 50% will die before their second birthday.
  • SMA can strike anyone of any age, race or gender.
  • One in every 40 people carries the gene that causes SMA. The child of two carriers has a one in four chance of developing SMA.

Saturday, January 01, 2005

Hope for Emily Jewelry Order Form

Feel free to use this form if you are ordering Hope for Emily Jewelry.