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We want to wish everyone a very Merry Christmas and Happy New Year! We also want to thank everyone who has helped support us this year, be it with a donation, time, or prayer. Thank you all very much. We do not know how we would have gotten through this year without all of your support. We also wanted to send an update on Grace’s condition since not all of you have access to her Care Page or receive the update emails. Of course we also want to update everyone on our family as a whole. So, it has been a quite a year for our clan. It started in January, like all of yours, and got very interesting in April. This is when we went to Phoenix for Grace’s surgery. She had surgery to remove a growth on her hypothalamic gland. The hypothalamic gland is located in the center of the brain and pretty much controls everything in the body. This malformation was causing Grace to have hormone issues, multiple seizures a day and weekly rage attacks. The seizures were beginning to take effect on her cognitive skills and the ‘rages’ were traumatic for everyone. There were complications after surgery which caused us to be in Phoenix longer than expected 7-10 days. Grace spent over 60 days in the Phoenix hospital and over a week in a California hospital after her medical transport. The big issue continues to be Diabetes Insipidus (DI), but she’s also developed the following since surgery: dramatic weight gain, decrease in metabolism, and low thyroid gland activity. Each one of these complications are the cause of other lesser complications such as balance issues, sore and stiff joints, extremely cold extremities and being tired. She currently takes 5 medications to help manage these issues. At 8 months post surgery all of these issues are improving slowly. Currently her weight has stabilized, with a very strict diet, at about 51 lbs which is up about 17 lbs since surgery. We try to keep her moving, when up and playing, so her knees do not get stiff but if she walks too much they hurt from the added weight. The DI is the one issue still causing the biggest headache. DI causes her to urinate constantly which raises her sodium levels dangerously high and it must be regulated w/ a synthetic hormone (DDAVP). To try and keep her sodium levels in check we must track every ounce she drinks and weigh every diaper to keep her ratio of ins-to-outs balanced. This has kept her from being potty trained. When the synthetic hormone wears off she can not control her bladder and pees constantly. Her DI has also required us to keep her Broviac Line in for the frequent sodium checks. This requires daily flushes, traumatic weekly bandage changes and makes a good bath all but impossible but it sure makes the blood draws much easier. Her periods of sodium “stability” are increasing so we are hoping that we will be able to remove the Broviac Line early next year. She continues to require monthly Lupron injections to hold off her Precocious Puberty and will continue this treatment for the next 7-8 years. The blessing of all this is that Grace has been seizure and rage free since surgery. We are hoping to start weaning her off her two anti-seizure medications at 1 year post operation. In addition, her 6 month follow up MRI shows no detectable Hypothalamic Hamartoma which means so little remains that it can not be seen w/ modern technologies. We are currently taking Grace to speech, occupational and physical therapy every week. Her speech is improving. She is still talking in fragmented 4 or 5 word sentences but is improving everyday. She loves her little sister, coloring, and her constant companion Baby Blue, her doll. Her smile is contagious. She will be 4 on Christmas Eve but seems older. The extended time in the hospital played havoc on her psychologically but her mood and playfulness is starting to return. We are praying that as her new complications are overcome she will continue to improve and have a wonderful childhood. The surgery truly was a blessing because with out it she would have continued to decline but now we can tell people she is continuing to improve.
Of course there is more going on in our family. Sister Sarah. She is now 2 years old and is quite the character. She is talking up a storm and loves books, Playdoh, coloring, helping her sister, dancing, singing and puzzles. She and her sister have a sweet loving relationship. Sarah does look out for her sister but once in a while you can see a gleam in her eye when Grace gets frightened of the toy vacuum cleaner and “runs” away. It’s the typical sibling thing. Grace does get her back. It is quite a sight to see when Grace has had enough and chases her much faster sister into the bedroom. It is hard to put a stop to it while trying not to laugh. Erica has returned to working part-time from home as a consultant to her previous company. It is wonderful that she is able continue to do this from home. Grace’s constant fluid management requires one of us to always be near. My company has been wonderful. Pretty much the whole company assisted w/ the Brighter Day for Grace Fundraiser by planning, setting up, volunteering, or just enjoying the festival. My co-workers even assisted by donating some of their PTO to help w/ the expense of being in Phoenix for 5+weeks and multiple trips back on weekends to see Grace and Erica. It was no surprise that Sharrah Dunlap Sawyer was voted “The Best Small Civil Engineering Firm” in the nation. We truly have so much to be thankful for and I hope everyone realizes that we are all surrounded with wonderful loving people. Love, Perry, Erica, Grace and Sarah
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