The past few months have been a bit intense. It all began December 28th when John's right eye essentially dislocated. It was a total shock and a very scary moment for me, John and our awesome friend, Betsy. John got to ride in an ambulance and take his first trip to the E.R.! His eye was placed back in position and January started out with a lot of appointments. We didn't expect this to happen, and we sure didn't want it to happen again. So it was decided that a second anterior cranial vault was necessary. On Monday May 16th, Drs. Fearon and Sacco will be moving John's brow bone forward to protect his eyes and opening the front of his skull for brain growth. This is the same surgery that John faced in June 2008.
John had an eye procedure done January 14th to partially close his eyelids and keep that right eye in place. He also met with Dr. Stager to determine if muscle surgery might be necessary, it is believed that John is missing a few eye muscles and resecting the remaining ones should give him better control over his eye movements. This will likely take place later this year after recovery from the vault. We also met with an allergist in January. The chronic sinusitis and difficulty clearing sinus and ear infections with single rounds of antibiotics suggested we needed to see if John has a significant allergy problem and make sure his immune system is working properly. Turns out the immune system is fine and he had an allergy to dust. Great, my kid is allergic to my housekeeping. So just add "improve housekeeping" to my to do list.
At the end of January, Tate's stepdad, Steve, passed away unexpectedly. Tate has had a tough time with the grieving process, but the kids have lifted his spirits with their sweet prayers and images of Heaven and Granddad. Steve was a wonderful father and grandfather. We all miss him dearly, and cling to the fun memories.
With so much frustration building with our insurance battles (I will save this for another post), we also applied for MDCP this year. This is a state program for children that are deemed medically dependent. We didn't know if we would qualify but we can't seem to find any other programs out there to help us financially. After a minor (for us) medical year (tubes, sinuses, two sleep studies, one MRI, tonsillectomy, and one exciting e.r. visit) we just about drowned in our nearly $25,000 out of pocket medical expenses. So we figured we had nothing to lose (except maybe our house...kidding, kind of) and decided to give it a go. We began the process on January 14th and have jumped through hoops, filled out books and books of paperwork, harassed our doctors for letters with specific information, endured home visits, enjoyed a lovely Easter night at a nursing home in Tyler and continue to wait for word. Praying it comes through soon...we are also keeping our fingers crossed that the medicaid portion of coverage will retroactively begin prior to this big surgery. If we don't get it, we will find a way, it is what we do, but this would definitely be a huge relief.
So the real kick in the teeth came with the burglary of our home four weeks ago. Although I thought I was going crazy (so glad I don't have a recording of my 911 call) and the loss of security has been a hard thing to start regaining, we have been blessed with an amazing support system of friends and neighbors. Calls were made, concern was expressed, a hotel was booked before we even thought about where we would sleep, meals were provided, housekeepers were sent, childcare was provided and insane acts of generosity and thoughtfulness brought comfort back to this home. A week after this event, a dear friend delivered a box of money, a collection from neighborhood friends. I don't have words for this act of selflessness and compassion. We are blessed. We were able to replace our computer, and the rest went to help with our security system installation. We are slowly replacing some of the things that were taken, (we are still discovering additional things that were taken every few days), but we recognize that those are just things and we have bigger fish to fry. I have not been upset by any of the "things" that were taken except for my computer...I had so much on there that had not been backed up, from medical files, financial files, budget information, letters I had begun writing to congressmen about the ridiculousness that is insurance. And the photos, I would give my eye teeth to have those photos back. But alas, it isn't to be so, and I will just move on and take more photos (and back them up) from here on out. I am so grateful the kids seem to know nothing of what went on in the house...my amazing friends collected them from school minutes after I called 911 in hysterics and shielded them from the mess that was our home (it was a mess before the burglary, it was a wreck after).
All that to say we are doing good. We have recovered well and are so grateful for our friends, family and church family. We appreciate all the love and support, we feel your prayers. We want to thank our parents for their unending support and understanding our needs right now and giving us the space we need to gather ourselves and move forward.
We are gearing up for Monday. John is in a good place, make that a great place. He is in fact excited. We are so lucky to have this little man in our lives, giving us perspective every day on what it is that is really important in life. Please keep John, his doctors, and our family in your prayers on Monday morning. Surgery is scheduled for 7:30 am, and we anticipate it lasting between 4 and 6 hours. I promise to update the blog as often as I can. And Tate will likely be updating his facebook as well.
I leave you with a few pictures of our sweet babies.
1 comment:
Great post! It's back up.
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