A new favorite food

Olivia has discovered a new favorite food.....asparagus. I know I was a little surprised too but she loves the stuff. Over the last couple of weeks I have noticed that Olivia doesn't seem to want/need me to cut all of her food up into little bite size pieces, instead she loves being able to take a bite of something then put it back onto her plate. Last night we had asparagus for dinner and I carefully cut several up into little bite sized pieces for her plate. She took one look at them and then reached over to my plate to get a whole asparagus. She refused to eat the ones I had cut up for her but loved eating them whole. I tried to get a couple of pictures of her eating the asparagus for my mom who loves asparagus as much as I do but she was eating them so quickly it was hard to get a good picture. I finally decided that I would video tape her eating the asparagus but then of course she didn't want to cooperate.

Father's Day

After all the excitement around our house lately it was really nice to spend a relaxing day at home! On Father's Day I had planned to surprise Mike with a trip to the zoo and a beach BBQ at a park near the house. After seeing how grumpy Olivia had been on Saturday we decided we'd rather spend the day at home. We did some chores around the house and went grocery shopping together. I know this may sound like a day of work but I think that Mike and I both enjoyed getting some things crossed off our to do list. That afternoon we took advantage of the great weather and spent some family time together in our back yard. Olivia and Mike loved playing in Olivia's inflatable pool (it's huge) and we had a backyard BBQ complete with s'mores.

Thank You!

Thank you so much for all of your thoughts and prayers! Olivia did get through her surgery just fine so now we'll just be waiting to see the results. It was a traumatic weekend for Mike and I but Olivia seems to be recovering nicely. Olivia's surgery on Friday seemed to last FOREVER, it was almost exactly 3 hours from the time we waved good bye to her as she was wheeled off in a little red wagon by the anesthesiologist and the time we were able to see her in recovery. We were able to go home on Friday afternoon but she was pretty groggy the rest of Friday and on Saturday. Fortunately she woke up feeling great on Sunday and was back to her usual self so we were all able to enjoy a good Father's Day (more on that later). Olivia has two of the tiniest stitches I've ever seen on her little forearm from where they did the skin biopsy. They will dissolve so we don't have to get them removed but she discovered them for the first time on Sunday and I'm terrified that she'll scratch and pull them out.

Now all we have to do is wait. They are doing some very complex tests to the two skin samples they gathered so it will take at least a few weeks for us to start getting the results. Once we do get the results they are 99% accurate so we'll finally know something. I know that my military spouse friends will appreciate this the most but throughout this process I have been completely shocked at the special attention I feel we've been given throughout this process. Many of you may have heard about the great military health care benefits and I can honestly say that it is free but you do seem to have to sacrifice a lot of other things for the cost. For example, routine appointments must be scheduled weeks, if not months, in advance, you often are seen by a nurse practitioner instead of a doctor, appointments are rushed with little time for questions, appointments aren't always private, waiting rooms are always crowded, there is no cost to fill a prescription but the average wait time in the pharmacy is at least an hour. The list goes on an on but I remind myself that we don't have any health care expenses and we should be grateful. This experience has been completely different from start to finish! Olivia's doctors have all been fantastic about reaching out to both Mike and I to make sure that all of our questions are being answered. Olivia's doctor actually called the evening before the surgery around 7pm to make sure that Mike and I didn't have any questions. And here's the part that shocked me the most. After speaking with Mike for about 10 minutes he then said, does your wife have any questions? And he proceeded to explain everything to me again. Of course Mike and I were both listening in on the entire phone call from different phones in the house and we were shocked that someone cared enough to spend so much time explaining things to us. We are so grateful! It has made this experience so much easier!

Olivia Update

As some of you know, our little kiddo has had some complicated health issues lately. It’s been frustrating dealing with all of the doctors, they all have Olivia’s best interest at heart but it’s frustrating for us as parents to hear different things from different doctors. We’re learning that all doctors have their own way of interpreting things and that medicine isn’t always an exact and precise science.

Basically at this point they’re working on treating two separate issues. The first issue is her sinuses. For whatever reason Olivia has an excess of sinus discharge, she’s got a lot of snot :)
They have tried treating her for allergies and determined that she doesn’t have allergies. They tried using various medicines and combinations of medicines and determined that the things they usually use to treat the symptoms in children (and even in adults) aren’t successful. They have decided that the next step is sinus surgery which they are doing this Friday. The surgery is endoscopic so there’s not any cutting and the recovery is very quick. They’re going to be opening up the sinuses to make sure that they are not clogged and they are able to drain properly.

The second issue is that the doctors are concerned that she might have a Storage Disorder. Storage Disorders cause the body to inappropriately store waste materials and byproducts that should normally be discarded. This all sounds a little scary and it can be scary but it is treated by various enzyme supplements and in worst case scenarios by dietary restrictions. Olivia has several positive symptoms that might indicate storage disorder (the sinus issue can be a symptom, the speech delay, her facial structure, and enlarged liver) but she also does not exhibit several common symptoms (no heart issues, no behavioral issues, no issues with joint movement) so at this point they are still doing more testing to determine weather or not she has a storage disorder. The situation is further complicated by the fact that they symptoms she does exhibit can all be tied to something else—her sinuses could just be underdeveloped, her speech delay could be related to her sinus complications and the fact that she couldn’t hear well for the last 12 months, her facial structure resembles a combination of both my facial structure and mike’s, and her enlarged liver could be the result of all the antibiotics she’s been on for the last several months. During Friday’s surgery they are going to do a skin biopsy which will allow them to do more in-depth testing to determine weather or not she has a storage disorder and there is the possibility of doing a liver biopsy that could again give us more information if it is determined necessary.

Over the last couple of weeks Olivia’s case has been presented several times at Seattle Children’s Hospital and I’m confident that Olivia is getting the absolute best medical care and treatment possible.

Thanks again everyone for your concern and support, we'll be sure to let you know how the surgery goes!