I used to tell myself that this will get easier. That our life won’t be all consumed with research, therapy, doctors appointments, travel, decisions, phone calls, fights with insurance companies (I could go on) … That was until this past weekend. I decided, officially, that no, this will not get easier. I feel better now that I have no expectations. Come on life, hit me with your best shot!
Two days later it did. Life gave us a great big smack upside the head. Apparently Mattie’s right ear did not heal after surgery. Her ear clogged with dried blood and after 10 days of using drops to get the blood to loosen, we were told that the surgery would have to be done again! Are you kidding?! I asked the doctor if this was common and of course, it is not and this never happens. I asked the doctor what are the chances it will happen again to her ear and he said, it won’t because it does not ever happen. Ummmm yea, we just proved that wrong! Seriously, What are the chances!? Our nurse said to go play the lotto. I rolled my eyes in return (later that day I bought a $1 ticket and of course lost). So that leaves us with having to put Mattie under again. Surgery is set for December 6th.
It took a few days to recover from that smack so as I am moving through our everyday life of research, therapy, doctors appointments, travel, decisions, phone calls, fights with insurance companies PLUS working full time and being a mom, when life laughs at us again and says, “I got another one up my sleeve”.
I know I have mentioned that we have seen 3 doctors to get 3 opinions on Mattie’s eyes. Well, we ended up seeing a 4th eye doctor based on eye doctor #1 recommending us to get another opinion from another eye doctor in her practice. So, I said why the heck not? Let’s hire every eye doctor in Tampa to give an opinion and then put them all in a hat and pull a winner (I thought it sounded like a good idea, she did not). I booked the appt anyway and guess what… OPINION #4 – LETS DO NOTHING! I seriously almost laughed in this doctor’s face. How can we not do anything when there is OBVIOUSLY a problem? So completely frustrating! We had an appointment 4 days later with eye doctor #3, and at this point we decided that we would pick him and ditch everyone else’s opinion. Eye Doctor #3 decided that yes there is a problem, that eye doctor #1 and #4 are incompetent, and he wrote a prescription for Mattie to get glasses. He really wanted us to give it a good try. He is worried that if Mattie’s eye continues to turn in, her brain will decide that since the turned in eye is not being used, the brain will just “shut it off” completely. Well, that is not good! Mattie needs all her parts that are working to continue to work. So we proceed to go out and buy a $300 pair of glasses that, of course, Mattie refuses to wear. She cries, yanks, cries some more, until I cant stand it anymore and rip them off her face for her. At least I can say we tried. We went back to see Eye Doctor #3 this past Monday. The big news of the week… Mattie is going in for eye surgery. 2 more surgeries in the next 33 days. Poor girl 😦 Hopefully the eye surgery will fix the crossing and we won’t have to worry about glasses for a long time.
Let’s move on to some more positive things that are going for Mattie! Mattie has really developed cognitively the past few months. Since the tubes were put in her ears, Mattie has started to say a few words. It is remarkable in itself since only one ear is hearing right now. Mattie can now officially say Joba, Cracker, Kitty, Mama, Dada, and No. It really is so amazing to hear her say words after not hearing any words for so long! Most of the time Mattie repeats the words or just blurts them out rather then using them with meaning, unless she is saying Joba – her favorite person.
Mattie is also signing a lot more as well. I last wrote that she started to sign the word more. Now she has added to that by signing milk, eat, and please! The other day I was sitting at the table with her giving her a snack and I turned my back to her to look at something else. She proceeded to calmly tap my back and when I turned toward her, she signed more! I was so excited to see this! The thought process that it took for her to get my attention and get a snack just shows that she is starting to cognitively develop. Yea!!!!! Check out this video of Mattie signing by clicking HERE
She can put her 2 pointer fingers together to make a star when we are singing twinkle twinkle little star. She started to grab her toes again (we started back up doing cranial sacral massages and I think it really helps her to separate her upper and lower body). The best and most wonderful skill she has recently acquired is dancing! Currently her favorite song is Gangnam Style. She really likes hip hop / dance music 😉 – Click HERE to see a short video of Mattie dancing.
Mattie had mastered being able to blow kisses and has now mastered an actual kiss, with lips puckered and full sounds. It melts my heart when she gives me a kiss without asking.
You guys are truly special parents. You have more strength than anyone I know.
KEEP ROCKING IT MATTIE!!!!!!
She looks so cute in her glasses. We are always thinking about u all. Please keep the up dates coming. Luv reading them. Good luck. Luv u all
lol – She kept them on for all of 4 seconds while I snapped some pictures 😉 Thanks Molly!!
Love the updates, thank you for keeping us a part of your journey, as always sending love and prayers! Will add extra special prayers for the success of the upcoming surgeries!
Mattie seems to be accomplishing so much! So sorry to hear about the surgeries – I know how frustrating and upsetting that is. Thank you for sharing you all’s story!
Good luck with the surgeries Jess! Mattie is in our prayers. She is so adorable. Gets cuter everyday! So glad to hear of all her successes such as blowing kisses, signing, saying words, dancing… Wow, that is awesome she is making such progress. Keep up the great work. Love you lots, Gloria