Always waiting for the other shoe to drop

Do you ever feel that way? I don’t think I generally do, but I’ve been bad about that lately. It’s Murphy’s law…when your husband is deployed, anything and everything that could go wrong, does.

Last week Ethan and I went to Ft. Belvoir to have his back x rayed. He’s been putting his hand on his back a lot, but not in any pain, so we just wanted to make sure everything with his rods looked good and this would tell us if we could wait until this summer for his next surgery. No task is easy for Ethan, it breaks my heart. Stepping on a scale at the doctors office completely sets him off and he’s just terrified. X rays were no exception and they ended up having to take double what they needed because they couldn’t get clear images with 3 of us holding him down. I got the disk and mailed off to Philadelphia and have been waiting to hear. The nurse wrote to tell me she got them and would ask Dr. Campbell what he thought, but mentioned how he has grown, asked when my husband will get home from his deployment in case surgery needed to be moved up and that she would ask the doctor and get back to me. Today she wrote back saying that Dr. Campbell reviewed the images and compared with his last and he doesn’t think he will need to have surgery this summer, but wants to see us when Dan gets home. First thing I think is that’s AWESOME! But then worry sets in…why does he need to see us? Does he need to tell us something else? It’s WILD. I think it was just the way it was communicated, there was no reassurance that everything looked great and this was great news, it was just, “may not need surgery this summer, but you need to come in.” The nurse practitioner called to set up an appt and I just got a weird vibe. I’m sure at that point she was just trying to assure me all was well, but it all just seemed a bit off. If there’s one thing I’ve learned, it’s to enjoy each moment, so I’ll shove these weird feelings in the back of my mind and keep on keepin’ on. It’s hard to do, you always have that next surgery looming and creeping into your thoughts. I started worrying about this next surgery shortly after Thanksgiving. He does not do well with the surgeries at all and this next one is a bigger one with his rods needing replaced. His VEPTR’s don’t bother him right now, he’s all boy, jumping, crashing, completely wild and I love it for him, it doesn’t slow him down. WIth a replacement, they have to take everything but the anchors out and replace it all, it’s so much involvement with the skin, muscles and moving his shoulder blade. Much more pain than an expansion, which he doesn’t do well with either. I worried they would damage a nerve or that he would be in pain all the time. It sucks. So much. I do feel relieved that we can push this surgery back even more. Dr. Campbell invented the VEPTR devices that Ethan has, it’s been amazing going to him and being under his care. Not sure when he will be retiring, but I’m hoping we can find someone like him that takes Ethan’s unique situation in mind. Most docs won’t wait longer than 6 months to do surgery, he waits a year and this go round, it looks like it will be longer. Just so exciting and hope this continues throughout the years! Ethan is super tall, so I was literally thinking he’s grown out of them. So great to get good news.

I am very thankful for my little boy. Times get difficult and we have our struggles, but there is always so much to be thankful for! I also can’t wait for warmer weather and Dan to be home and our family to be complete again. Ethan misses his daddy. May can’t come soon enough!

-Brittney

Update on Life

Man..where to start? Life has been busy! I wish I would have kept up with writing on here, but I’ve at least kept up with writing emails to my kiddo that (I hope) one day he will be able to enjoy.

I’ve not written much since we moved back from Italy, honestly. We had our son and his medical issues kept us busy, I took the time to enjoy every moment with him. Albuqueruque, believe it or not, will always hold a special place in my heart. We bought our first home there, had our son, met some amazing people that will forever be apart of our lives. Being away from family and not knowing what was going on with Ethan was incredibly hard, but my coworkers were absolutely amazing and I miss them every day.

We’ve been in northern Virginia now for almost 2 years, which sounds crazy, but we like it here as well. We are closer to Children’s Hospital of Philadelphia for Ethan’s surgeries, the services for autism are also good here as well. Ethan started a preschool autism class last February, which was a huge obstacle for him. After a little over a year, he is doing so, so well there. We love our BCBA that comes to the house for therapy daily and also his OT/speech therapist as well.

Dan deployed in October and things have been interesting around here. Ethan and I have settled into a routine, but nights and weekends are the hardest since it’s cold outside and it limits us to what we can do. We went to Florida for the holidays and spent 4 weeks there, which was amazing. It’s always nice to take a break from therapies and thaw out for a bit in the middle of winter. Ethan turned 4 in February, so we had some friends over for a little celebration.

We’ve been having issues with our heat and discovered we have an oil leak, so waiting for the landlords to get their ducks in a row with that and dog up the tank and contaminated soil. I got a 20 gallon fish tank set up for Ethan and he LOVES it! Right now I have to salt and pepper cories, glofish and a gourami.

I started a ketogenic diet mid November and have had great success with that. I feel great and have lost a lot of “stress weight” that i’ve carried since having Ethan. Even with a month stall, I’ve lost 34 pounds! Crazy! I love it :) I was looking thru some pics today and I can finally tell in my face that I’ve lost some weight, which is always a good thing! I also chopped my hair off! Got a long bob cut, the lack of carbs killed my long, healthy hair, but I do love the new cut. This is a pic from last week, me and my sister were posting pics on snapchat and thought this one turned out pretty good. Why can’t snapchat filters apply to real life, minus the flames coming out from my head? ;)

Life is pretty good, considering. Ethan’s having some adjustments, which are always hard, but we get through them. We had x rays last week, which is a chore because he is terrified of everything, to make sure his titanium ribs look okay and to determine if we can wait until the summer for his next surgery, just waiting to hear back from CHOP about that. We will get his service dog in about a year, which makes me SO happy! I truly think this will help him so, so much and many people in our lives are invested just as much as we are, so I know this will be an exciting time.

That’s all I have for now! Dan will be back in May, so we are very close to the end of his third deployment and excited to have him back in time for the nice/hot weather.

Until next time,

-Brittney