We are back from Lizzy doctor visit in Madison,WI. Lizzy has seen DR.Schroth since she was 8 months old. I have to say it was one of the best ever trips we have taken to Madison and doctor's visit. Dr. Schroth was excited Lizzy was doing so well and HER LUNGS WERE COMPLETELY CLEAR!!!!!!!!! Tens day of around the clock treatments paid off. Knowing what Lizzy needs to gets better makes my job as being Lizzy caregiver so much better. I could of not of done it with-out Christen's help. I was very drained after my illness and we worked together every 2-3 hours around the clock. DR.Schroth did say she probably did need to be in the hospital she was so sick but.... we did a great job getting her well.
Elizabeth is 27.1 pounds 41+ inches long(The crowd roars) !!!! She has gained even during her illness!! Shocking considering she was only on donor breast milk, tolerex and pedalite for two weeks with her supplements for two weeks. I am shocked, stunned amazed and thrilled. I was making 1000ccs of her formula at a time using 20-25 ounces of breast milk, pedilite and 1 pack and 3 tablespoons tolerex. I tried putting her back on her regular diet of 16 ounces a day of breast milk, Baby food and tolerex and water and she was having issues being choky so I put her on back on her miracle mixture. She had diarrhea for days and lost no weight. She actually gained!! She has had no tummy issues on this mixture. My theory is that they work more being ill and need more calories but with a formula they are able to absorb. I guess it worked well! These kids so so well with breast milk. It amazing how well they handle the fat in breast milk.
Lizzy has had amazing chest expansion also. DR.Schroth wanted to remeasure because she had such a huge expansion. She has not lost any strength with this illness even though she was off her Hydroxyurea for days. She is reaching her mouth again also.
Her Scoliosis is worse but not by much. Maybe 5 deghrees more. Not sure how much the Ortho Doc has to see the Xrays. She was also not laying straight for the Xrays so we will probably have to retake them. She is in the up right position more in her power chair and has grown a lot over the past 6 month. She also has not been in swim therapy since March 5. DR.Schroth is going to call Lizzy's PT Monica this week and explain to her WHY Elizabeth needs swim therapy. So. keeping my fingers crossed that Monica will listen and understand.
Lizzy is back to base-line as of yesterday and I am so happy. I was so worried she was not going to be as strong after the influenza she just got over but she is !!
Lizzy is such an great kid. Her strength and attitude is simply amazing.
We got to see Cory, Katie, Avery , Aubrey Poole, Doug, Andrea, Sophia, Lila Doebbert, Grandma Judy Bowles, DR.Schroth and Lisa(her nurse). It was so great!! They all looked great!!
Sophia just got out of the hospital after her back surgery. She looked awesome.
We spent a lot of time with Katie, Avery and Aubrey. We had dinner with Cory, Katie , Avery and Aubrey on Friday after our appointment. Lizzy loves Katie and the girls so much she wants to move up there NOW!!! Lizzy kept asking "Where is Katie?" How come she has not called??", I really like her she is so nice". She was all worried about Sophia's Mom Andrea also. " Where is Sophia's Mom? " "Is she okay?" Lizzy is just too funny.
I have bursitis and its so bad I have not been able to lift much this past few days. Its in both arms right now and its extremely painful.
Paul has been offered a few jobs out of the area In Chicago or Philly . He applied at Mecalux(Former Interlake) and they have not called him in for an interview or sent him a letter telling him to report to work. They have hired back but.... I am afraid because of his union involvement and his age they have no plans to hire him back. Pray they call him back!!! I do not want to move away from our family. Mecalux is offering the experienced maintenance mechanics the same rate of pay and the insurance is cheaper. Does that not beat all. I am not sure why they have not called him back but there is a reason. He has excellent references and was a good worker over 30 years. I am not understanding this at all. We were told something entirely different by the union. Please Please Please Pray he gets called back to work SOON!! We do not want to lose our house.
Many prayer for all the sick kiddos. We have added you to our prayer list.
We believe in miracles!!
www.our-sma-angels.com/elizabeth
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