Update on all the things

Easter came and went, and because the days fly by so fast now, my mind has not gotten the message to move on. I am still mulling over Resurrection Day. And I honestly hope I never stop. Resurrection Day is not just for one day. It should be every day that we fall to our knees in awe and humility over what Jesus has done for us. The hope and promise that the Resurrection offers us -- overcoming, conquering, victorious new life. 

There are no words to express how thoroughly grateful I am that Jesus lives. That Jesus lived - a perfect human life to sacrifice in our place, and that Jesus lives again forever. Not only that, but because of Jesus' work on the cross and his resurrection and ascension, we have the Holy Spirit!! When I sit and meditate upon all this, I can only stop and worship. How incredible and faithful is our God. And how grateful I am, especially in this new season.

I could not do anything successfully without the Holy Spirit these days, or any day. 

Baby Grace is doing amazing. She has made so much progress even within the last week. I swear she is a new baby. Simple things are making all the difference for her. She is honestly the sweetest, cutest, most beautiful, best baby. She is getting so long. She has 2 teeth coming in. She is reaching and grabbing at toys, and moving her head all over the place. 

Here is a rundown of what has been happening lately. 

PHYSICAL THERAPY

We got a new physical therapist who is incredible. She is really pushing Baby so much in the bed ways. Really challenging her and Baby Grace is only rising to each challenge and surprising Miss Melissa every session. She is rolling from belly to back on both sides and working on sitting unassisted!

We did get some news about her eyes. It was not surprising but also not want we were hoping. 

EYES

Her pediatric ophthalmologist confirmed that Baby Grace has Cortical Vision Impairment (CVI). She is legally blind, not completely or totally blind. Obviously, it is not what we were hoping for our baby girl. On top of everything else, we were hoping for some more healing in this area. But also, we were well aware of this strong possibility. It is very common that those with HIE also have CVI, because of the lack of oxygenated blood flow to the brain. In her case, her optic nerves have some portions of atrophy (death) due to her brain trauma. 

There is so much hope though! Because of this early diagnosis, she is eligible for vision therapy and special services. There is possibility for some improvement, as far as neuroplasticity, not for eye anatomy. And I know there is so much help and support for those with CVI.

FEEDING THERAPY

I was finally able to speak with a feeding therapist. The trouble is Baby Grace will not be accepted into feeding therapy because she shows no interest in eating by mouth. But how will she begin to learn to be interested without specific oral therapy??? It is so backwards and frustrating. She needs it more than most and will not get it because her "deficits" are greater. So I did talk to the sweetest feeding therapist and she has basically volunteered to check in with us once a month, on her own time, to help with tips and ideas. It is so wonderful to have other people willing to help and support our sweet girl, and not treat her like she is incapable of learning or growing.

The feeding therapist immediately looked at Baby Grace and said she has a lip tie that needs to be clipped. No one had mentioned this before! I understand that they were more focused on lifesaving measures, seizure control, and physical ability but I could have had this simple procedure done months ago and maybe her mouth control could have got a better start. 

LIP TIE

We found a pediatric dentist that 1) takes Medicaid and 2) clips lip ties on babies. I figured with those two qualifications we would be on a waitlist for months. But we were able to get in that week. 

If you know me, you know I cannot handle the dentist or teeth in general. Some bad or even traumatic experiences have lead me to be very skeptical of every dentist we see. I did not have high hopes but at least she could have this procedure. 

I cannot tell you what a relief, a blessing, an answer to prayer this dentist is. He was so sweet and kind to our girl. He did not speak about "keeping her comfortable" or "she may always..." He spoke of her future, her abilities, helping her to do more and do what she is doing better. 

He confirmed she needs a lip tie cut. Her tongue does not have a tie, but it is pretty immobile which has been due to poor posture. So he showed me some positions and exercises that will help her with her posture, tongue position, and her breathing. In addition to cutting the lip tie, he will do a laser treatment in the inside of her mouth and cheeks. This will hopefully activate her muscles and nerves. 

As we were talking I asked about the laser treatment -- if it is red light therapy. And this is where we both surprised each other. He was surprised and excited that I knew about red light therapy and encouraged us to start. I was equally surprised that he was a dentist and knew all about these things too. He surprised me again by recommending a few local chiropractors as well. What an amazing, unexpected answer to prayer!

I am actually looking forward to our appointment again with her new dentist and I will be moving the other kids to his office as well!

EARS

A few months ago, we took Grace for a hearing test but they were unable to get an accurate reading because she was too awake. But they did notice that she had fluid behind her ear drums. ENT confirmed this and was set to schedule surgery. However, this ENT office was an hour away so we got a referral for a local office. Well, they never got around to scheduling surgery. We have waited for 3 months. So I called the original ENT and was pleasantly surprised to get a call back with a surgery date in a couple of weeks! In early May, Baby Grace will go in to get tubes put in her ears and while she is sedated they will perform a new hearing test. 

FORMULA

I have been chronically our frustrations with formula on instagram. There have been several issues that have complicated her ability to get formula, aside from the general complications of medical supply companies and a gtube. 

Because Baby Grace has a gtube, her formula is delivered to us each month from the medical supply company (DME). Or it should be...Also, because we get this shipped, she is not eligible for WIC. We received her first month's shipment in November. And ever since, her particular formula has been on backorder with the company. We have had some amazing friends and angel strangers who have collected her formula for us. We do get a stipend through foster care for her expenses, but since it is supposed to be covered by insurance, we should be able to use the stiped, not on formula, but services and equipment. 

So, we were waiting for her formula to be in stock again, and then the Similac Recall hit. 

Not only was there no formula, but what there might have been was being tossed and taken off of shelves in record time. Her formula was scarce enough already. It was nearly impossible to find. For the last 3 months we have been scrambling to find her formula. We have had some amazing people gather up what they had in their neighborhood or from their friends for us! More incredible blessings.

I contacted the dietician to see about a comparable formula that would be in stock. 

Then I called the DME's warehouse to make sure this particular brand was in stock with them.

Then I had to call the pediatrician to write a new script for this formula and amount, and sent it to the DME. 

This, with the voicemails and waiting for calls back and hold times...took about a week to get done.

Lord willing, we will finally get a month's shipment IF this formula is still in stock in the warehouse. IF NOT, I'll have to go through this whole process again. 

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Thank you so much for praying for our sweet girl and our family. Please continue to pray for healing, redemption, new connection, and new life within her little body. Pray for wise, kind, and discerning doctors. Pray for the right therapy and the therapists; that they would see her and support her, that they would be blessed for working with this amazing miracle baby. 

Please also pray for her adoption to progress quickly and without hindrance or hiccup. Pray for the social workers to get their paperwork done quickly and correctly. Please pray for the judge to see that she is ready for permanency and adoption. Please pray for the judge to have an overwhelming desire to move mountains for this little girl. Pray that we have supernatural energy and wisdom to advocate and care for this miracle baby! In Jesus' name.