Happy Holidays and a Happy New Year to you all. It has been exactly 9 months (to the day) that we received Nolan’s diagnosis. I couldn’t forget that day and all the emotions it brought if I tried. It seemed like as soon as we received his diagnosis, Menkes Disease started taking over his little body. This year has understandably been a HARD year for me and for our family. But, the love and support that we have received from family and friends has really made an indescribable impact on our lives. I am so shocked and thankful for those near who bring us meals and for those far who send cards and words of encouragement. Thank you for following along with Nolan’s Story and for supporting our family.
Nolan has had a pretty good (and busy) December. At the beginning of November, Nolan’s urologist suggested inserting almost an ounce of diluted antibiotic directly into Nolan’s bladder every single day for 3 hours. This practice would be an attempt to help decrease his monthly urinary tract infections. If there’s a chance he would stop getting monthly UTIs, this would delay any more bladder surgery. Of course we were willing to try, and our amazing nanny, Amy, was on board as well (just like she has been with literally every thing we/she has had to do for him). So we started the Gentamicin bladder flush every day. To my surprise and relief, Nolan didn’t get a urinary tract infections the entire month of November.
Nolan had an appointment with his urologist in Chicago on December 13th. This appointment was just to switch out his bladder button. I would be the one switching it out while our urologist stood by in case I needed help. If it went well, I could change it at home every 8 weeks. Despite being a bit nervous, the bladder button change went very well, and Nolan only fussed a little. He was happy the second I picked him up. What a relief! And I was happy to report to our urologist that it had been 6 weeks without a UTI!
Well of course a few days later (the week we were supposed to fly to Florida to visit my parents), Nolan developed a fever, started throwing up, and was quite cranky: all symptoms of a UTI for him. I was skeptical, but when we took him in sure enough he had developed a UTI. He was placed on an antibiotic (Cipro) for 10 days and was noticeably feeling better after two days on the medication. Nolan still has a chronic cough which hasn’t seemed to go away (since September), and in the past week he seems to have more spit and secretions. We plan to mention this to his doctors soon and maybe try some allergy medicine.
At the beginning of December, Nolan was able to meet and be photographed by a wonderful lady who started the Precious Baby Project. Her name is Angela, and she photographs medically fragile babies for parents at no charge. Angela has gained international recognition for her work and lives right here in Indiana. She raises awareness for these families and tries to showcase the tubes, medical issues, and sweetness of these babies. Angela’s main goal is to help families with medically fragile children feel as if they are not alone. Nolan’s shoot involved zebras because they symbolize being rare. In the medical field, doctors are told to look for horses and not zebras. Nolan is our sweet little zebra.
We were still able to travel to Florida this year. We had originally bought Nolan a seat on the plane in hopes that his FAA-approved car seat could fit in between the seats. Unfortunately, the only way it would fit was if it was upright and not reclined. Nolan has very little to no head control and is not able to sit in his car seat unless it is reclined. Because of this, his car seat takes up to much space and would not fit. Luckily we were able to get the seat refunded and I made a mental note to make an appointment with my chiropractor as soon as we got back in town since I would be holding Nolan on the entire flight there and back. Just for the record, Steve was already so scrunched in his own seat that he was unable to provide Nolan with the necessary head support when he did try to hold him (tall people problems, I guess)!
Nolan did great in the plane, and his big sis was an excellent helper. That being said, if we plan to keep visiting my parents in Florida for the Christmas holidays, we will need to try and figure out a way to fly with Nolan. He will be >2 years old and will require his own seat and also be required to be buckled up for taxiing, take-off, and landing. Having him in my lap obviously won’t be allowed, not to mention I don’t think I would be able to support his weight in another year even if it was allowed. The disability consultant from the airlines was kind enough to send me the “Approved Restraint Systems for Individuals with Disabilities” resource guide, but unfortunately those seats don’t recline either. So far, the only way we may be able to go would be to get a restraint seat belt system that would allow Nolan to lay on the seat itself and be strapped in. On the positive side, we could use this in any vehicle that has a bench seat, on the negative side, we would have to purchase two seats for one 2-year-old child, which is obviously not very economical (aka it’s insane)! So if anyone has any other ideas, please let me know!!! Thanks in advance.
Nolan has been doing well with the increased Gabapentin although it didn’t stop his flailing arms. Our pediatric neurologist decided to increase the dose of Onfi medication, and the past couple of weeks we have seen a reduction in spastic arm movements at night. It does appear that Nolan is sleeping better. He also seems to be happier in general.
Nolan’s physical therapy has been going very well. He has not yet started to use the stander because it doesn’t support his arms enough. We will continue our search for a different one.
Last, but not least, Nolan transitioned to a new bedroom on our first floor. We were able to convert our office into his bedroom, and he really didn’t mind not having a closet, so it worked out. As Nolan grows and continues to gain weight, having his room on the first floor will make it much easier for us to take care of him and minimize carrying him up and down the stairs. I’m sure more modifications will be needed in the future, but we will tackle those hurdles as they come.
Thank you all again for keeping tabs on our family. We are constantly blown away by the support. Have a happy and safe New Year. We will cling to the happy parts of 2018, but I’d be lying if I said we were sad to see this year come to a close. We are hopeful for 2019 and look forward to many more happy memories and hopefully a lot less heartache.