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Latest Update: November 2006 Thank you for your thoughts and prayers: Avery was such a trooper before and during the surgery. The day before the surgery, our wonderful doctor, Dr. Kit Song, explained all he was going to do in the surgery. Then he surprised us by offering Avery an out--- he told her she could say no and go home the next day, or he could fix her feet. It was her choice. Avery looked him right in the eye and said, "I want you to fix my feet!" |
How
can I help? Avery Trust Fund Arthrogryposis - What exactly is it? "A Sure Grip For A Wild Ride" - Friedmann story about dealing with Little Avery's Medical Condition |
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It took almost an hour to find a quality vein for the IV, but they finally found one in her finger of all places. The surgery lasted about three hours. The first several days were quite painful, morphine and three other pain medicines were used by the pain management team until they finally found a combination that worked and she was able to get comfortable. The last two days have seen a remarkable
turn around for her and she is doing great. She is back to her smiling
self and her sense of humor is again ringing from her precious spirit.
Thank you for holding us up through your prayers during this time.
She will spend the next seven weeks in casts with no weight bearing
allowed, and then, it is back to therapy and her continued fight
to be all that she was created to be. October 2006 We have lost the battle. Unfortunately, the contractures in Avery's feet have won the day. We have fought against them for many years with therapy and stretching, but her little feet are now so far out of alignment, that we have no other choice but surgery. Our very special doctor, Dr. Kit Song, will be doing reconstructive surgery on her feet on Nov. 16. He has told us it will be very invasive and a very painful recovery for her. There is an alternative experimental procedure that he is going to try first, but he does not believe she is a candidate for this procedure and the results will not be effective. At that point, if he is correct, he will then proceed with the more invasive procedure. We are hoping he is wrong (so is he) and that the experimental procedure will work. It is less invasive and has a much less painful recovery. Please pray with us that the experimental procedure will work… thank you… By the way, we have lost this battle, but Avery is going to win the war! She is in Christ! Pastor Frank January 2005 Physician's Updates. Avery recently visited Houston to see her hand doctor. He provided us with several reasons why we should not pursue surgery on her hands. The surgery, if it becomes necessary, can be done at any age, even into adulthood. He is amazed at how well she has adapted and how much she can accomplish, and he wants to just watch her at this time and see how and what she will be able to do on her own. We will journey to Seattle in March to check
with the Arthrogryposis team there, and specifically Dr. Kit Song
to decide what therapies to pursue regarding her hips and feet.
We are also concerned about her right knee, which has been popping
ever since she started walking. April 2004 Avery is WALKING! This miraculous event occurred while Avery was at her physical therapy. As is usual, the therapists stretched her little body, and then prepared her for some work in the weight-bearing treadmill, an instrument used to get her acquainted with the walking motion without her legs supporting her body weight. This day however, Avery told the therapist that she didn't want to use the treadmill. The therapist, complied and offered to hold Avery and she could walk around the office with the therapist supporting her weight. Avery promptly told her she didn't want to do that either! At this point her therapist asked, "Then what are you going to do Avery?" And Avery said, "I'm going to walk." "But you can't walk," her therapist replied. "Yeah, I will do it myself" countered Avery. The therapist gingerly took her hands off Avery and off she went--- OVER FIFTY STEPS! The amazing thing was that up to this point she was able to only do about three to four steps at a time! She continues to improve, adding more and more steps. Sadly, she falls a lot. When this happens, she is unable to catch herself with her disease impaired arms and hands. She has knocked her teeth out on several occasions, but so far she has not experienced a concussion. We have a gracious dentist who continues to make her teeth for her at no charge to us! What a blessing! We encourage her to wear a helmet, but she doesn't want to be different. We understand that, but it is hard to not walk in fear as she continues to walk in confidence. Please pray for her continued healing, and for her continued stability in walking. With her brittle bones, it is a wonderful, but scary thing to see her walk! Thank you!
Frank
and Avery recently took a trip to Seattle children's hospital to
the clinic there... The hand surgeon has determined that she is simply too weak in her upper extremities to attempt a hand surgery,,, the goal will be to continue to work with her. In therapy in the hopes she will gain enough strength and flexibility to do the surgery later in her life (though he doubts this will occur). as far as her arms go, we will continue therapy and splinting in order to maintain her current range of motion and avoid further deformity... Her orthopedist said her hips look pretty good, but will probably need surgery again sometime down the road... the big concern right now is her feet... the contracture continue to effect her alignment which brings her quite a bit of discomfort when she attempts to stand... his opinion is that she will need surgery within the year. We were hoping to avoid this intermediate surgery as they anticipate that due to growth she will need additional foot surgery at about age 11. the plan at this point is to pursue aggressive serial casting and therapy in the hopes of straightening her out and avoiding this intermediate surgery though again, the doctor doesn't anticipate much success... we will see... |
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On the positive side, Avery was just named goodwill
ambassador for the Muscular Dystrophy Association for our region...
she will be in newspapers, magazines, on television, and will appear
at various functions for M.D.A.... she is a real cutie and seems
to capture people's hearts wherever she goes... she truly has the
favor of God upon her. we pray for her healing and invite you to
do the same... we will continue to pray for her healing until Father
directs us to stop praying... October 2002 September 2001 Recently, we took the kids out on a kite flying venture. We all had a great time, enjoying the rest of the day. That is, until, Avery decided to exercise her devious sense of humor. With a "wicked chuckle" she let go of her kite, at which time I had to chase the kite with all my might. When I returned to her with the kite, I told her that
was not the thing to do. She said, "O.K. Daddy." Then,
she proceeded with her "wicked chuckle" and let it go
again! And I had to run again. This of course, then turned into
a game. The other kids got involved in the running, (fortunately
for me), and we all had a great time. Avery too, bless her heart
tried to scoot along the ground to retrieve the free flowing kites.
The laughter was great medicine for all of us. As I strapped Avery into the van, she let go with a question that I knew was coming, but I did not expect until she was much older. She looked at me and asked, "Daddy, why are my legs like this?" It was like being socked in the gut. I thought to myself, "Oh God!", and proceeded to ignore the question. As I strapped Avery into the van, she let go with a question that I knew was coming, but I did not expect until she was much older. She looked at me and asked, "Daddy, why are my legs like this?" It was like being socked in the gut. I thought to myself, "Oh God!", and proceeded to ignore the question. Her tenacity kicked in, and she said with all the urgency she could muster, "Daddy! Why are my legs like this!" With tears in my eyes, I had to tell her what for
us is the truth, "Baby, I don't know why. But God loves you
and is going to bless you so much. He's going to meet every need
you have." March 2001 Avery recently completed her three-year diagnostic
testing. The people who tested her were the same people that tested
her two years earlier, they were absolutely amazed at what they
saw—"This is not the same baby!’ "Look at that!
Look what she’s doing! She’s not supposed to be able to
do that!’ What awesome things Father has done on her behalf—perhaps
this most recent account will provide some insight into the tenacity
this girl has received from God: She took Avery in and laid her in the bed. Avery rolled over onto her tummy, wiggled herself back and forth until her legs were bent over the bed at the hip, then she pulled herself upright and slid down the side of the bed, her weak (unable to stand) legs catching just long enough toslow her down, enabling her to throw her upper body backward, propelling her onto her backside for a "soft landing". "See mommy, I do myself!" "Yes, you did little girl. Yes, you did!" I believe I am going to have to take out the bed frame and lower the bed. I don’t believe that will be her last attempt now that she has done it once, and such a venture runs the risk of her breaking her fragile little legs. She is tenacious! And we thank God for her tenacity!!! January 2001 We are looking at some major expenses: Van with wheelchair life We have been moving very slowly, wondering, seeking as to how we are ever going to pay for these things. We just lost our Medicaid Part C which picked up a lot of what our insurance did not. Louisiana drops those kids from assistance at age 3, yet Avery’s therapy and medical needs will continue indefinitely. Well, a lady from our church got the idea of having our kids draw pictures, she put verses to them, and did a calendar to sell to raise money for Avery’s wheelchair. After the first Sunday, the donations were totaled up to the sum of (can you believe it?) $9,525.00--- the exact amount of the chair with as she put it “$25.00 to start on the van fund! It is an amazing thing for which we thank God. Of course, it troubles me somewhat.. told our Father that there is a much easier way---He could of course heal her and we would be done with it. He prefers to not heal her, and continue to demonstrate His love and care for her by meeting her continued needs with His continued care. One of my favorite teaching lines is that “To all that we need, He provides all that He is!” He doesn’t necessarily provide deliverance, or an answer of purpose or plan, but He does provide Himself and He is enough! Avery is living proof of this, and by proxy, so is the Friedmann family. We praise Him, and thank Him for His direct love and for His love which flows through His body the church to us! |
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| December
2000
Avery recently completed a trip to Children's Hospital, where she was immediately put back in to leg casts. The contractures in her little body will never go away, so therapists have worked hard to maintain the surgical correction of her joints. However, her feet have not held the desired form, so casting is the inevitable result. Her feet are stretched to the desired position, then a new cast is placed on her feet to hold them in place. This procedure is repeated weekly for six weeks in order to achieve maximum correction from the contractures. Though painful and uncomfortable, this is necessary to hopefully avoid future surgeries. She is a trooper. She has recently been fitted for a wheelchair. It
was great to see her have added mobility, but painful to see her
little body in such a big chair. Bittersweet is a word that has
come to mark the experience of her parents hearts in regards to
this special little girl and the progress she is making. |
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| September
2000
Last Friday, I took Avery to the therapist to give Janet a break. I told the therapist that Avery could stand now for about five seconds in her braces. We then proceeded to have Avery demonstrate for her therapist her new found skill---only she didn't cooperate too well at first. Try # 1- three seconds; Try # 2- two seconds; Come on Avery, you can do better than that! Try # 3- back to three seconds; oh well, one more try as we turned her around to see herself in the mirror. Try # 4- three seconds, four seconds, five seconds Yeah Avery! seven, eight, nine, come on girl---you can do it!!! 10 seconds---way to go Avery!!! Thirteen, fourteen, fifteen seconds Oh my God! Can you believe this? Twenty seconds! The tears are flowing now to accompany the smiles and the rapidly beating hearts! Thirty, forty, fifty seconds! Come on Avery! Not a full minute! Can you believe this? Yes! Yes! One minute and eight seconds! Put the girl in front of the mirror and look what happens! Praise God!!! One day, we all believe, therapists and parents alike; this girl is going to buck the odds and walk! One day--------- Thank you for your prayers! Thank you Father for hearing them! |
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APRIL 2000 On Thurs. April. 13, Avery had a grand mal seizure.
Janet was feeding her a bottle, when she noticed Avery's eyes glazed
over. Her little body began to convulse, following which she arched
her back up, and then went limp and stopped breathing. Janet thought
she had died in her arms. We rushed her to the hospital, got her breathing again, and after about an hour her body relaxed. She was not herself for several hours, but as the night wore on she began to become Avery again. Morgan was such a trooper through this latest ordeal. It must be hard for her little eyes to see her sister go through so much. We had a trip to the lake for fishing and tubing
planned the following day. Janet and I decided to go and take all
the kids...including Avery. We are not here waiting to die. We are
to trust Christ and live. All was going fine until Morgan took her
turn in the tube. At that point, Avery threw an absolute fit. She
wanted a turn in the tube. So,.....(yes we did it!), I strapped
her little body into a life vest and we dragged her around the lake
in a tube.
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