3 months old!

So I suck at this whole blog thing! Not because I am lazy though, but because I have been extremely busy. I can tell you that I have thought of many things to say this past month, while driving or in the middle of the night feeding Sweet Caroline, I come up with great material to talk/write about. But sadly a computer is never near me. I need a recorder.
Last I wrote, we were super excited to start the new year! 2010 was going to be our year! Sweet Caroline was healing/feeling fine and we made contact with NIH! It's amazing how things can change with one phone call.
On the early morning of January 3rd, I got a frightful phone call. My dad, who is young ps, had a massive heart attack and he was in Cardiac ICU and they advised me over the phone to "get to Tulsa as fast as possible". Well how in the heck are you supposed to do that with a 2 month old? Long story short, Web and I made it to Tulsa, and I begged and begged dad to pull through. I am happy to say that after 13 days in the CICU and 6 days in a regular room at the hospital, dad is on the road to recovery! He now has to complete 8 weeks of cardiac rehab, plus control his diabetes, then have open heart surgery and start the whole damn process of a ventilator and recovery again, but he will survive. Hell he will probably out live us all now that he will be getting a new path to his heart at such a young age! Needless to say, I have been driving back and forth from OKC to Tulsa at least 3-4 times/week and that was without Sweet Caroline. Now that dad is home, I can bring her with me and let's face it, she is his best medicine. I have seen such a huge improvement in him now that he is out of the hospital and now that he can hold Sweet Caroline. It's truly a cheap version of modern medicine.
Speaking of Sweet Caroline she is doing great! She is so dang cute, it's unbelievable. She has the most beautiful blue eyes anyone has ever seen, and the most gorgeous strawberry blonde hair. She has a smile that will melt your heart, and just recently she has found her voice and she absolutely loves to talk to you and smile. She recently spent her 1st weekend at the lake and she loved every minute of it. Daddy says it's becuase it's such a calm place that anyone would like it. I think it's because this was the 1st weekend in 3 weeks she was with both her parents at the same time. But I am sure it was a little of both. As for her health, Web and I think she is doing marvelous! Of course, what do we know? We aren't doctors, but I can tell you this; she loves to eat her hands (a trademark my dad taught her literally 6 hours before his heart attack) and she stretches her legs for me whenever I ask. If we were to go to the orthopedist tomorrow I would tell him no need to do an x-ray, she is healed. Sometimes when she and I are playing tummy time, or just swinging in her chair I wonder if she even still has OI? You can't tell by looking at her. And she moves all her limbs. No matter where I was doing the 19 days dad was in the hospital, I saw her every day and I made sure she and I did her exercises. I refused anyones help with it and did it myself. Yes, I know others can do it, but this is my daughter and I want to be the one that does it with her. It's our special time every morning. I will admit some mornings were rushed, but we still did them. Are they helping her limbs? I like to believe so. She doesn't fight me at all, I think it actually makes her feel better. So we will continue to do them.
As for NIH, we have postponed our February date. We took Sweet Caroline to her 2 month appt with her regular pediatrician and we asked her thoughts of flying to MD in Feb. She said absolutely not. RSV and flu season is at its worst in February/March. If we didn't feel it was something that absolutely had to be done at that time, then we should postpone. Well that was great news, because at this time dad was still in the CICU and the thought of leaving him made me ill. So we called NIH, gave them our dr's recomendation and we re-scheduled for mid April. Hopefully dad's open heart surgery will be over by then, and he will be in recovery mode! Heck hopefully by then he will be sitting at the beach in recovery! NIH also mentioned to us, that from what we have told them they might only see Sweet Caroline every 6 months, instead of every 3-4 months, because to them it sounded like she had a milder case! Whoah hoah!
I did ask what the 2 days of appts entails, and it's going to be exhausting.
Besides the flight to MD, staying at the hospital hotel for 2 days, she will have multiple appts with specialtists, physical therapists, rehab therapists, nurses, etc. She will have DEXA Scan, which will take measurements of osteoporasis and mineralization. She will have full body x-rays, WHICH SUCK more for the parents! She will have full body measurements, plus a skin biopsy which will tell us the level of collagen she has in her body, which will give us a better idea of what type of OI she has, plus how we should treat it. Of course, we can't treat with meds, because none exist. So needless to say, those 2 days are going to be exhausting and mentally draining not only for her but for Web and I as well! But if I have learned anything this past month it is that Web and I can conquer it! He has been my rock and knowing that I have a husband that I can count on makes my life pretty good!
So as you can see, we have been busy, and we have a busy few months ahead of us, but we will survive. Dad will definitely survive and unknown to Sweet Caroline she is the best medicine for us all. And tomorrow we celebrate her 3 month old birthday! No I am not one of those mothers that is really going to celebrate, but we will definitely spoil her with hugs and kisses. And who knows, if I am out and about I am sure I will buy her a little something!
I promise to be better at posting!!