new things

I am busy learning all about how to care for a special little girl who is considered medically fragile. M is seven years old and is about thirty pounds. She is tube fed, immobile, nonverbal and suffers from Rett Syndrome. She is the sweetest, happiest little girl too! We've been bombarded with medical equipment, nursing training, and learning all sorts of new things, but it has been a good adventure.

Fat lip

S. had his second trip to the ER last night, nearly a year after his first one. He was playing outside, tripped and fell right on his face. His mouth instantly gushed blood and the older kids started screaming. I remained calm, but realized, S may need stitches. I called his pediatrician and they said he would need to be seen by a specialist since the cuts were on his lips.

My friend was able to watch three of the kids, and C was able to stay longer at her friend's house. I took S. to the hospital and thankfully it was a short visit. The overall experience seemed way more traumatic than last year. You could tell S. was fearful and in pain. Poor kid. I must say, the hospital where he got treated last year was a lot more child friendly and thorough. S. did not see a specialist, but a nurse practitioner who used super glue on his cut.

Today, his lip is twice as big as it was last night, and he has a fever. He had a slight fever already from a cold, but it was not quite as bad as today. So we called the doc again and he was seen this afternoon. They said it is going to look bad, and there is not a lot they can do. They did prescribe some better pain meds for poor S. He doesn't want to eat or drink much.

S.'s cranium

S. had a big day at the children's hospital last week. I was all set to go, and when I woke up at 4:30 am, it was pouring rain. I was exhausted. I was dreading the two hour drive and long appointments. My sweet husband stepped in and volunteered to go instead. I was a bit nervous about having him go, just because I have always been the one there. I didn't want to be left out of the discussions or plans for S! But it was all ok. S. did great with the anesthesia. He slept a long time after the MRI, but was not fussy when waking.

The craniofacial team (two surgeons) saw S. and were running on time! The plastic surgeon came in first, and answered some questions and concerns we had about S. He will wait until next year to do the big reconstructive surgery on S's eye sockets and nose. This will also include a bone graft. Ouch.

Next the neurosurgeon came in, who said S's brain looks great. His shunt is working well, and his chiari has not changed. We are supposed to continue looking for symptoms from the chiari malformation. He will be present at the big surgery since it will be involving brain tissue.

There was some concern about S's eye. One doesn't drain due to his deformity and there is always eye crust and tears running down his checks. (even when he hasn't been crying) They are referring him to ophthalmology to do some tests and see if there is anything they can do to help.

S. in radiology

Please pray for S. right now. He is under anesthesia getting his MRI. J. took him to his appointments instead of me, so I am enjoying being home getting caught up on things.

Migraines and such

My C. has been having migraines this week. Every day for nearly seven days. Yesterday and today she has been feeling a bit better, so that is hopeful. It concerns me because it came out of no where. She has never had issues with headaches before now. She goes to the doctor on Monday to discuss this and her ADD medication. She needs to have gained weight since her last check up three months ago.

L is on his way with dad to Grandma's house. They will be leaving tomorrow morning for Florida. I am not far behind them! He is so excited.

We are preparing the back yard for the playground to be set up. We figured out we will need to move our fire pit which will be a bit of work, but it's the only place in the yard where the big set will fit. We also pulled out our ugly rotten deck. It was such a hazard and I couldn't wait to pull it down. Now J. will be working on rebuilding some stairs down from the house. When we have some more money we can build a nice replacement deck or patio. The playground has been ordered and we are thinking it will be put in early May. We will have some volunteers (anyone?) to come out to help set it up and do some celebrating too!

E. and S. had a school conference the other day. Teacher G had a lot of good things to say but also noted some of the areas that concern us too. E. will be trying Kindergarten in the fall. He will enter with an IEP and he may have to go two years in a row if we feel it's best. S. is doing pretty well, with learning classroom rules and routines. He bit a little boy a few weeks ago and we discussed that. He were also told he has a willful side and gives the teachers the stink eye often!

Yuk

Wanted to pass this on from the Washington Poison Center:
During the month of March, in celebration of Poison Prevention Week, we are offering free Mr. Yuk Stickers to educators and organizations in Washington State.

Quantities are limited. Please download our order form here and fax or mail it back to us.

This offer is made possible by a generous donation from our good friends at Bartell Drugs!

Make A Wish

We got some good news today. Our S. is qualified to receive a Make A Wish! It took quite a while and a lot of advocating for him, but it is starting to come together. Our doctor was able to speak with the MAW chapter person, and she explained to the doctor what criteria does qualify. It was decided that having the VP shunt does qualify him for a wish.

If there is any question if having a shunt is considered a having life-threatening condition, read this:

Hydrocephalus is almost always treated successfully with surgical placement of a shunt or an ETV; but rarely does either treatment last a lifetime without complications. A critical aspect of managing hydrocephalus is being well informed and staying vigilant about potential life-threatening complications. Most problems associated with shunting or ETV occur weeks or even years after the surgery. When things are going well, it is easy to forget about hydrocephalus and having a shunt or an ETV. We encourage you to stay alert and informed.

Knowing what symptoms to watch for will help you become more at ease. Although the early symptoms of shunt malfunction or infection in children—fever, vomiting and irritability—are similar to many childhood illnesses, you will learn to determine the symptoms associated with shunt failure in a particular individual. Adults tend to exhibit the symptoms they experienced before treatment when there is a problem. If you have any doubt about symptoms, don’t hesitate to contact a doctor. If you suspect there is a problem with the shunt, you are wise to have it checked by the neurosurgeon rather than ignore it. It is better to have a false alarm checked than to leave it unattended. Remember, although shunt complications can be very serious and become life threatening, they can be treated successfully when they are discovered early.

An estimated 50% of shunts fail within two years and 20-50% of ETVs close up within five years. Either treatment can fail at any time. Infections are less common, but still not infrequent. Be informed and vigilant. Be prepared to act quickly. Mere hours can mean the difference between a resolvable complication and brain damage or even death, especially in children.

I am so thankful for the time Make A Wish took to work on behalf of S. They didn't just dismiss him at the first stage of the application. They really cared and made many phone calls to get things sorted out.

Now we will have S's paperwork sent to two local MAW volunteers who will be meeting with our family and S. They will talk with him and try to see what his most heartfelt wish is. This will be complicated, since the whole concept is not really understood by a 3 year old. Once we asked him if he could have anything in the whole world, what would it be? He said, "a cookie!"

S. update

S. in Jan. 2011

S. at the hospital in April 2008

We are preparing for S.'s yearly MRI and craniofacial clinic at the nearby children's hospital. During that time, we will discover how well his VP shunt is working, see how large his Chiari is, and come up with a plan for facial/neurological surgery. S. was born with an opening in his skull, between his eyes above his nose. When he came to our care, he was receiving medical services from a doctor in CA. Now that he is adopted by us and on our insurance, he is seen by a team of doctors in WA. And apparently doctors and surgeons do things differently all the time in rare cases like S'. And if you ask them, they will tell you that their way is the RIGHT way.

S. had a "patch job" in his opening. The neurosurgeon used some form of medical cement and pushed it into the hole to close things up. This left S. will a strange looking scar, but much better than the large bump full of CSF fluid that was there before. The team here want to redo things. They want to remove this patch, do a bone graft from S's hip bone, and reconstruct his face. We feel this is for the best, but are nervous about it at the same time.

Now, we have decided to refer S. to Make A Wish. I contacted our local chapter, found out what conditions qualified, and sent the local contact person S's doctor's info. We waited and waited to hear back. I bugged a little. Waited more. Then asked if MAW would contact our pediatrician instead, thinking he'd be less busy. We finally heard back that our doctor wrote he DID NOT QUALIFY. Huh? I called their office to find out why. A day later his nurse called with their explanation. Basically, they don't really understand MAW's definitions for eligibility. I argued a bit about why S. should qualify, but felt it might be better to wait to hear back from the children's hospital. They have all his information and have dealt with MAW quite a bit. I contacted the social worker who sees us every visit and found out that we must have given MAW the wrong fax number. The local chapter and hospital are now communicating so it's another wait to see what happens. S's wish, by the way, is a safe play ground to play on. I really hope he gets his wish. He's been through a lot in his short little life. And will be enduring much more in the near future.

Vanilla ice cream and chocolate chip cookies..

What could go together better?

To help with the travel costs for our trip to Africa and other expenses relating to M's medical care, we are making and selling ice cream sandwiches to our local NW friends.

Vanilla ice cream sandwiched between two large homemade chocolate chip cookies. Individually wrapped. Suggested donation (please give as you are led!) of $12 a dozen. You may also order smaller or larger sized batches. They will be ready for pick up or delivery by August 14-15th. To place an order, leave me a comment, give me a call, or email me at adoptinghaiti@yahoo.com. Sorry, only Whatcom County residents please, unless you are willing to make the drive for some yummy goodness!

Photo credit to Kiss My Spatula

Little M.

I have been very private about M. on my public blog. Really I'd love to share more about her, how we came to commit to her, and even specifically where she is and her full name. I want to post the pictures of her. (the sweet grins and the bruised/bandaged) I want to share with you because we genuinely need as many prayers as possible for her and our family. But unfortunately there are people out there who read public blogs, misinterpret information or use the info shared to hurt others. And in the international adoption world, one can not be too careful. But since we are coveting your prayers this week and the weeks to come, I decided to share a little more about M. today, and why she needs your prayers.

We have been trying to adopt a five year old girl in XXXXXXX for about 8 months. M. was diagnosed with a form of epilepsy with partial atrophy of the left side of the brain. She has been seen at the few hospitals available in her country. Her seisures (she was having them every 10 minutes) are seemingly under control with medication but she has not had a current EEG. Since January she has been heavily medicated to help with her epilepsy.

Her medication has not been monitored and she is showing signs of neurological problems or is having complications from medication overdose. She is weak on one side, with partial paralysis and it seems to worsening. Her speak is slurred and she is difficult to understand. She plays alone and does not interact much with her peers. She is not able to go to school with the other children in her home. She is not able to concentrate on school activities at home either. She seems to enjoy repetitive activities, like jumping on the trampoline and washing shoes. She falls when she tries to run and she bumps into things.

Her caregiver wrote the following: We feel that her concentration got less since she is on this medication. She forgets things faster and because of this she seems frustrated. She cries more often. We feel that she needs more attention for this and we can not really offer that. M. is going backwards every day. It is going fast the last week. We have seen a big difference in the 5 weeks. Her walking, talking and movements are also going behind.

Would you please commit to praying for little M. for the next month? Or until she is here with us? We heard that our application is filed in the courts and we are waiting to see if we might be able to make it before the courts close for summer holiday mid July. This may be tight, but is possible with the Lord's help and intervention.

Ways to pray:

• For M.'s health and development.
• For a court date sooner than later if it is God's will.
• For wisdom for our attorney.
• For compassion and mercy for the judge we are assigned.
• For our finances, since last minute tickets right now are far more than what we budgeted for.
• For our family. If we leave soon we have a whole lot of logistics to plan out as we leave our kids for an unknown amount of time.
• For people to be willing to step up and help M. where she is, and help our family while we are gone, and transitioning M. to our home. We can not do this alone.
• For patience and the ability to trust that God truly has a perfect plan, in His time.

S. news

S. had an appointment at the hospital on Monday. He is doing well. Actually his doctors and surgeons were surprised that he was able to walk and talk. I was happy to report that he was doing these things, plus climbing, escaping, running, jumping, laughing, making funny faces, plays games, throws and kicks balls, has a temper....the list goes on and on. I was surprised that the medical staff was expecting so little of S. No one had told me that it could be a possibility, but it makes me so much more thankful for all that he can do. So when my child goes missing at a friend's birthday party and has six adults canvassing the property looking for him; I will thank God that he is clever and fast enough to sneak away!

S. has Chiari I malformation. It is pretty big. This can cause HUGE problems for him, causing extreme pain, mobility problems, swallowing and breathing issues. He will most likely need invasive brain surgery to correct this if any symptoms appear. For now, he doesn't communicate that he is having any symptoms. But if he is, we need to bring him in and his neurosurgeon will decide what to do. Please pray with us that S. will be healed and not need surgery on the Chiari.

S. will have plastic surgery in a few years on his nose as well. They want to wait on this for now to be sure that it will not effect his development.

Incoming

Please pray for us. I am going to be generally vague and discrete on here, but know that we are about to experience some big things. We are excited, nervous, diving in blindfolded while trusting God. Tomorrow is a big day.

More news:

• We had a busy weekend celebrating my birthday and Easter (and company for dinner).
• Today is E.'s birthday! He is four and so excited. He tells people that he sang (then sings the entire Happy Birthday song) and then "I blow out the candles like this..." and makes the blowing motion and sound. Really cute.
• The coming weekend is busy too with a friend's birthday party and church activities.
• I have a feeling that as spring/summer arrive, my calendar will get more and more filled.
• E. has another hearing screening coming up next week. I am also waiting to hear if he will need to get an evaluation for the special preschool.
• S. has an MRI and craniofacial clinic appointment at the hospital on Monday. Please pray for him as they will have to use anesthesia for him during the MRI. Also, pray for me since he will not be allowed to eat in the am, and his appointment isn't until 11 am. Ugh!

Help for Haiti

The Medical Advocacy Team's website has a list of places to donate funds for Haiti. A team of people is being coordinated to go there to help as well. They are looking for nurses, doctors and other medical trained people who can travel there soon. Here is the link.

Test Results...

I got a phone call from E.'s doctor's office today. The blood work is in. My heart skipped a beat, wondering what that could mean. The nurse decided to go through each individual test. HIV. negative. Hep B. negative. Hep A. negative. Everything is fine. BIG surprise... just kidding. We are very thankful that E. is healthy. This was E.'s fourth blood workup. The poor little guy. I hope it will be the last for a while and that it will appease the doctors.

Trip to the doc

E. was SOOO excited to see the doctor today. He was talking all about it, even up until they called us into the exam room. He kept telling me he was going to say "good morning, doctor". While the doctor and I were talking, however, he was not as thrilled about being there. He kept telling me to not talk to the doctor and was throwing his toys at me and covering my mouth. Then the fun began, TB tests (both arms since he moved on the first one), two shots and talk of blood draw. I will wait for our return trip on Friday to draw blood. I need to wait for E. to forgive me for putting him through the torture he endured today.

We discussed speech therapy (he will get a referral for private therapy). We discussed another eye doctor who is great with young children. We discussed E.'s frequent urination and thirst (his urine was great, so no concern). We talked about his slow weight gain and growth. He has only gained about four pounds since March. He's in a size 2T and is 3.5. No real concerns though. He is getting his blood re-checked, and TB tests, since the doctor recommends doing this when kids first come home, then six months later. After his flu booster next month he will be all caught up on his vaccinations. He had to get most of them redone in the US.

Spina Bifida Study

The Spina Bifida Genetics Research Project is enrolling mothers who have given birth to a child with SB in a study to determine if genetic variations in folic acid metabolism account for an increased risk of having a child with SB.

From the results of the study, it may be possible to develop a test that can identify at-risk women prior to conception. They could be treated by their physicians the same way as women who have had a child with SB- with high dose folic acid supplementation.

To register and get more information please go to:
http://www.sbgenetics.org/

Burdened

I feel weary. I cannot even begin to explain how sad my heart is at times. I have suffered with the gift of compassion for many years. I remember the feelings I had as a young child while watching a "feed the starving children" type commercial on tv, or caring for a sick pet. I have these same feelings now, tenfold. I get so emotional at the thought of a child suffering, whether it is in the same county as me, or across the world. There are so many, and we can't save each one. It is just not possible for us to do it on our own. We can make a difference in a few lives though.

I believe that God brought several people in my life for a specific reason. I met my friend Sarah several years ago at my kids' homeschool program. She had adopted from Children of the Promise in Haiti. I was eager to learn the details. J. and I had considered adopting in the past, and the seed that had been planted by a Focus on the Family radio program had begun to sprout.

Sarah and I became fast friends and soon we began volunteering together. We traveled to Haiti and helped save the lives of a few precious children. We've been through heartbreak and experienced great joy. Sarah and Salem both started the MAT from the ground up. I soon became the host family coordinator.

Though our adoptions, traveling to Haiti, and helping several children, my life has changed. My priorities are much different and I feel happier about the little things in life. My relationship with my Father God has changed too, and for that I am most thankful.

I do, however, carry this burden. The burden of hearing about a little girl, orphaned and abandoned because of an illness. Unable to obtain medical care because of the country she was born in. Her story is so similar to our son's. I want so badly to help, but I am limited to what I can do, because of finances and circumstance.

I did not seek her out. The Lord brought her story to me. The timing is not perfect for us, we are busy, and I have a lot going on in my family. But there is something about her that is calling out to me. I am not sure why, I feel the need to do what I can to save her life. I am reaching out to others, so that they can experience the same joy and blessings I have experienced by helping a child.

It is the best feeling in the world.

Psalm 28

Of David.

¹ To you I call, O LORD my Rock;
do not turn a deaf ear to me.
For if you remain silent,
I will be like those who have gone down to the pit.

² Hear my cry for mercy
as I call to you for help,
as I lift up my hands
toward your Most Holy Place.

A Beautiful Poem

God Sent to Me an Angel

Written by Paul Dammann

God sent to me an angel,

it had a broken wing.

I bent my head and wondered

"How could God do such a thing?"

When I asked the Father

why He sent this child to me,

the answer was forthcoming,

He said "Listen and you'll see."

"My children are all precious,

and none is like the rest.

Each one to me is special,

and the least is as the best.

I send each one from Heaven

and I place it in the care

of those who know my mercy,

those with love to spare.

Sometimes I take them back again.

Sometimes I let them stay.

No matter what may happen

I am never far away.

So if you find an angel

and you don't know what to do,

remember, I am with you,

love is all I ask of you."

Appointments galore

We had a busy week! E. and S. both had dental appointments, vision appointments and hearing evaluations this week. The dentist went well, E. didn't go for the x-ray too much, so they will wait on that for next time. S. has a deep molar than is going to require another fluoride treatment in two weeks. The vision appointment was just for E. and he has astigmatism. astigmatism is usually caused by an irregular-shaped cornea and is easily corrected by eyeglasses, contact lenses or surgery.

The plan is, since he was not really cooperative, we will be going back in six months to do another eye exam. Same song with the hearing eval. He was pretty good there, but does not like getting things poked in his ears. His tests showed one ear has some hearing loss. They are not sure how accurate the reading was so he will be coming back in six months. Hopefully by then he will be a bit more mature and not so wiggly! S. has excellent hearing which is good news since he has a higher risk of having problems.

A beautiful story about a birth defect

I love how well this article was written... a story by a mother about her daughter born with a basil encephalocele:

The Hidden Birth Defect of the Brain