September News Part Two

Dear friends:

As the month comes closer to an end, we have had so much happen.

Kidney Biopsy:
We have not heard at all on Michael's kidney tests. I promise to let you know as soon as I hear.

God's Mercy
On Sunday, we received a huge outpouring of God's mercy and financial abundance through the generosity and faithfulness of some dear friends who helped us pay another bill. God is good. All the time. All the time. God is good.

Sunday's Luau:
We had the pleasure and priviledge of attending a Luau at Huntington Central Park. It was quite a last minute surprise, and we were so pleased that we had no plans and were able to go. Friends took care of the gas for the car and lunch, which was another blessing. All the kids liked the guys twirling the fire and the dancing. The boys enjoyed the "Money" dance. Someone gave the kids each a dollar to put up on the stage. What a day! I have never personally been to a Luau, so it was just magnificent.

My 3 year old Linguist
Shawna is learning just a fabulous vocabulary. The other day she was quite tired and stated "the blood in my brain is annoying me". Today, Shawna asked me to take her blood pressure (which of course is wonderfully normal) and stated "my trachea is bothering me". It turns out she was thirsty. She knows all her colors extremely well, and 3/4 of her ABC's. On a side note, she is also highly interested in horses right now.

Our TV:
Our large screen TV is finally on the fritz. It has had a good life over the past 10 years. Now, when we turn it on, we only see green. The audio is just about the only thing on it that works. Ah, well. I really liked it a lot because with my vision the smaller screens are harder to see, and I lose a lot of the detail. Shawna was disappointed because she really likes to watch Word World but the only ones we have for DVD are Lucky Duck and Sheep with a Star.

Heart Cath #2:
Joseph is all pre-registered for his heart catheterization number two on the 29th. After speaking with the doctors, it is not preferable medically to keep repeating the heart catheterization. Waiting on the procedures and results is often the most difficult part. If the Revatio (Sildenafil) works and his pulmonary artery pressures are lower, then there is still hope for him to have the atrial double switch procedure. If it does not, then his chances of receiving the atrial double switch heart surgery decrease drastically. Of course, we will look at the options which include Nitric Oxide therapy (if he responds to it) and ECMO (or heart bypass) among others. The most concerning part is if Joseph passes the point of opportunity for the atrial double switch and is unable to have that surgery due to the pulmonary hypertension, then his options are much more limited. At that point, Joseph would not be a candidate for heart transplant alone; he would require an entire heart-lung transplant due to the pulmonary hypertension. Of course, this is all premature. Please pray with us for miraculous results. Please pray the Lord guides the physicians hands.

What's in a Name:
Joseph asked me the most amazing thing today. Joseph walked up to me after drawing a beautiful picture of a house with mommy in it. Joseph asked me "Mommy, how do I spell my name?" I told him, and he proceeded to write it down. His J was upside down, and he had trouble with the small e. He got ALL the other letters correct on his own!! JOSEPH WROTE HIS OWN NAME! To my recollection, I have encouraged him to write his own name, showed him how, told him the letters, helped him write his name, and practiced with him in school. Joseph, however, has never asked me of his own accord how to spell his name. I am SOOOO excited. This is a HUGE step for him. Until now, he has mostly found writing his name a source of frustration unless we provided a LOT of encouragement and praise. Joseph was so EXCITED! I will save this precious little piece of paper in his memory book. His writing his name on his own shows very clear progress in school. We are so very proud of him!

Speaking Up
Joshua is learning how to speak up. Sometimes he can be difficult to understand, and we have found the at least half the problem is projection. He talks so quietly; it can be hard to hear him. When Josh spoke up loud and clear, we started giving him High 5's and High 10's (two hands). We praised him for this. It clearly has paid off. As we are now seeing more and more, Josh is able to project much better. He is much easier to hear. When his two front teeth come in, that will help as well.

A Budding Artist
Gabriela is becoming quite the artist these days. She enjoys drawing, painting and sketching and says one of the things she wants to do is become an artist like me and Grandma. She has been working at creating amazing new monsters with mixed bodies from different animals. They are quite creative, some with long necks and one eye and a slug body. We definitely will be saving these in her portfolio.

Miracles Happen Everyday!
We had applied for Joseph and for Michael to The Make-A-Wish foundation on the same day, same time. Well, to our great surprise, The Make-A-Wish foundation chose Michael to make his dream come true; we just received a letter in the mail today (Tuesday, September 22, 2009). Michael received a very nice card from them. We will hear more from them in a couple of weeks or so when they send the "dream team" to talk with Michael about his heart's greatest desire. Michael wished for a trip to Walt Disney World and ABC Extreme Home Makeover to come to his house. We will see what happens, and I will keep you posted on that of course. Michael is so excited that he is grinning from ear to ear. Michael has been having quite a rough time of it lately with diet restrictions, feeling like there is so much he cannot eat, so much medication, and even pain just getting dressed in the morning. This morning he just wanted to stay in his pajamas, so his muscles would not hurt worse getting dressed. I am so tickled. I haven't seen Michael smile that big in a while.

Seizures
Michael has an appointment tomorrow with neurology. Over the weekend (since Friday) Michael started having seizures; they are not full blown seizures because he is still conscious and aware of what is going on. The primarily seem to affect his upper body and arms and hands. Those types of seizures are called partial or simple seizures (as opposed to seizures that affect the whole body, memory, awareness and consciousness which are called Complex seizures). I will let you know what the doctor says. After being in the hospital three times in the last three months (between the emergency room and in patient stays), this was just not something Michael needed.

I love you all. Keep Michael is prayers.

In Christ,
Jennifer Richardson RN
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