On Sunday, May 18, Becky, Titus and I drove down to Houston for his visit with the glaucoma specialist. We had a good trip and stayed at the Hilton next to the hospital (still using all those Hilton Honors points I have from years ago of traveling). Early the next morning, we showed up for his evaluation under anesthetic with full expectations that they would take him straight into surgery. We had the same anesthesiologist we had last time (who is wonderful) and a relief to us to have someone who knows Titus and his condition. After they took him back, Becky and I settled into the waiting room expecting to be there for several hours. You can imagine our surprise when Dr. Feldman came out 45 minutes later and said "his eye pressures are fine - no need for any further surgery - you're free to go home as soon as he comes out of recovery". We were stunned (and asked him to repeat it all again). This means that the channels they installed in the two previous eye surgeries are doing the job of regulating his eye pressure and therefore controlling the glaucoma. Titus bounced back from anesthesia pretty quickly and by 11am, we were back in the car on our way back home to Frisco. All I can say is, somebody was praying.
Titus will still have very limited vision - if any at all. Although Dr. Feldman will not use the word "blind", he was very clear that the optic nerve was never fully formed, there was damage done by the glaucoma, and at this time, there is no known cure/surgery for this. Until Titus can communicate, we will not know how much sight he has. We do know he responds to light and dark, and we feel he can see shapes/shadows, but time will tell. We are still coming to terms with this. It's not like we didn't know this, but to have it finalized by the doctor is still hard. I began doing research on deaf-blind children and programs, but had to stop. Like with many things we've learned, we have to forge ahead and make a plan, but there are some days, you need to be quiet and grieve a bit.
The following Wednesday, May 21, Titus had his MRI/CT scan. This had been previously scheduled for earlier in the month, but was postponed since the machine had broken down. It was another early morning to get up and be at Medical City early, but they were right on schedule and by noon, we were back home. We had 3 doctors requesting the results of the MRI/CT scan: the ENT (Dr. Bauer) was the primary doctor since he's looking to see the make-up of Titus ears and if he will be a candidate for cochlear implants, the Neurosurgeon (Dr. Price) who would be checking the status of the Dandy-Walker variant (cyst at base of brain) and determine the need for more MRIs and would have input into the cochlear implants, and the Geneticist (Dr. Cramer) who is still looking for clues of any syndromes that Titus may have.
Yesterday, the assistant for the neurosurgeon called to let us know that Dr. Price had reviewed the MRI and did not detect the Dandy-Walker variant (cyst). We know that last month when we met with her, she had reviewed the MRI from when Titus was 2 weeks old and saw the cyst then. We know she talked to us about Dandy-Walker (which can cause severe motor skills delays) and now she is telling us it's not there and she doesn't need to see us back in her office for a follow-up. If we were stunned when Dr. Feldman told us his eye pressures were fine, you can only imagine how stunned we were to hear this news. In fact, I'm still in shock. Again, all I can say is, somebody's praying and God still has the final word.
We heard today from the ENT and have a scheduled appointment with him on June 5th. He has not received the MRI results yet, but will by the time of our appointment. Our prayer is that Titus is a candidate for cochlear implants - and if so, we can make a plan for those to be implanted.
Paul had applied for and was approved for intermittent FMLA at work, which means he can now take time off when needed (up to 12 weeks) to help attend to Titus. And, we are still waiting to hear if we were approved for MDCP (Medically Dependent Children's Program). We have had our nurse visit and social worker visit a month ago, and are awaiting the pediatricians office to complete their paperwork. Once we are approved for MDCP, Titus will be approved for Medicaid - which will also allow us to start therapy back. Currently, our insurance only pays for 20 days of therapy (which we have almost exhausted) and considering that Titus will need several types of therapy (speech, occupational, and physical) we need to get him into a good program that will begin working with him. Becky had a visit with one of the therapy centers yesterday and was very pleased with how they worked with Titus (they wore him out after 15 minutes), but also how they showed/instructed her to work with him. They were also very encouraged on how's he's progressing. They feel his development is around 2 months of age - which is how we feel he's been responding. He is lifting and holding his head more and more - and if on his belly, can kick those legs to scoot around a bit (ok, maybe an inch - but I was cheering him on big time). And again, I know somebody's praying for his development.
We also have set up an appointment with a financial planner who specializes in special needs trusts. If Titus is approved for MDCP and Medicaid, he can not have any assets or savings and cannot be the beneficiary in our will, or it will immediately disqualify him and he could lose his benefits for life. A special needs trust can be set up legally to assist in some ways and we will be learning how to do that along with having our will updated. Honestly, as a father, having to remove him from the will has really hit me hard, but I know his heavenly Father has it all in control and will never remove him from his spiritual inheritance.
This week, Becky and Paul have come down with a bit of a cold/drainage and Titus has caught it. So far his lungs are clear and his breathing is fine, but he has a little hacky cough and we are suctioning him every few hours. But even with a cold, we are seeing marked improvements in his breathing. He's still on oxygen, but his levels are consistently high. We are testing him at lower levels or without oxygen and he is going longer without each time. And even with a cold, Titus is sleeping more and more at night. Last week, his monitors went off only 1-2 times a night - which is a HUGE improvement over 2-3 times an hour. We actually have gotten some good sleep and I know (based on several emails we have received) many of you have been praying for rest for us (please DONT" STOP! )
As Titus turned 6 months old, I couldn't help but reflect back over the last 6 months. Life has certainly changed, we have learned more information, met more doctors/nurses, spent more times in hospitals than ever imagined, have had (and continued to have) sleepless nights, felt completely helpless at times and have shed more tears than you can imagine. But, we have also felt peace, felt the prayers, and know we have been carried through by countless prayers of people we know and don't know. As I stated once before, we have always wanted this to be a journey of faith and not a journey of fear. And, one of the most beautiful gifts we have received is that Titus is the happiest, most content baby you will ever meet. He rarely cries, he greets you with a huge toothless grin, he laughs and giggles, he is filled with joy and we are blessed to be his parents.
At our Father-Son campout 2 weeks ago, one of the boys (Christian Loth) came up and asked me how Titus is doing and let me know he's still praying. At Becky's GEMS cookout, numerous parents let us know that their children still pray for Titus every night. So Christian and all you boys and girls that are praying for Titus - thank you! God hears your prayers and is answering them in a mighty way.
Please pray for these things in the next few weeks:
- Our appointment with the ENT on June 5 and that Titus will be a candidate for cochlear implants.
- Our application for MDCP will be approved so we can begin therapy and continue home health care visits.
- Titus' lungs will continue to strengthen and we can wean him off of oxygen.
- Titus, Becky, and Paul with their colds.
- Becky and Paul as they deal with all the diagnosis, planning, and change.
- Guidance and direction as a special needs trust is put into place and wills are updated