2020 11 07 speech

2020 11 07 Spaulding Rehab

I found that after all of this poor kids frustration .... a little patience (a lot of patience...really) in letting that storm pass....and Alex finally got into his element and begin his speech therapy toward communication.

Our days are long and tiresome. We are so great full and thankful that our nights are quiet and restful.

Alex is now at a point where medications have been ever-adjusting to a point where we administer meds only four times a day. A few weeks ago we were administering medications seven times a day. On Monday the 16th of November we may go down to 3 times a day. This past week we have finally cleared the last medicine at 9pm and first morning medicine at 6am so Alex and I now have ability to get nine hours of peaceful rest with no intrusions.

It has been over 3 months of professionals walking into the room several times per hour....every hour. Alex and I are in quarenteen from the outside world, yet we get several visits from various doctors hourly. This past week we eliminated meds and feeds from the hour of midnight to six am. This may seen trivial, but my goodness it is much needed rest.

Ive been getting up at 530am to get Alexs feed started earlier so that he is free from tubes by 8am. We are making all attempts to open his schedule for therapies.

Alex is tired. Alex is frustrated. Alex currently fears every new white coat or scrub with a stethoscope. Alex has lost a lot of trust in people and rightfully so.  It is taking alot of patience and calm voice to figure him out. His lack of communication is frustrating him. We are all working feverishly to learn his current form of communication. As a dad and an onlooker it is so so frustrating to see. I feverishly make attempts at guessing what he may or may not want. Mom and speech therapists are working on picture cards and word boards.

Saturday morning while watching a dvd Alex was frustrated. I put on "baby neptune" and he wanted "baby noah". He kept pointing at the dvd and banging his arm on the surface below him. I repositioned Alex in several chairs and couches in the room, but no success in consoling him. I put him back into the bed and changed the video. Once he heard the "baby noah" video, he lightened up,  cracked a smile and had a complete change of mood.  Mom sat next to him in bed and he began to mouth words. He and mom began naming animals and I found that after all of this poor kids frustration .... a little patience (a lot of patience...really) in letting that storm pass....and Alex finally got into his element and begin his speech therapy toward communication. Alex was wording, feeling and hearing himself speak. It was so interesting and so heart warming to see. He held his mom, he watched the dvd screen and he was naming animals on Noahs ark. He wasnt pronouncing the words completely, some were whispers and some were louder, none the less....he was wording, he felt and heard the words and he was communicating with his mother.

At 1030 this poor kid was soo frustrated, we dont know if he was in pain, if he was mad, if he was frustrated nor did we know what he was frustrated about. He was not happy and he was showing aggression that I have never seen before in him. Then at 1115 he was the happiest that ive seen him all week as he whispered the sounds "ephant. Nect. Big. Baby. Anda. Boat. Right deer. Zeba. Sobig. Lion. Roar. O my god. "

Within the same hour I saw a truly frustrated kid and a truly happy kid. He is a happy kid inside this shell of his body, he is in there and he is trying to come out.

This afternoon we will try PT. OT. and maybe a shower. Everything frustrates him so we take things slow and walk on egg shells

This is all new. This isnt easy for him nor anyone who witnesses. The frustration isnt pleasant to watch and I hold back my tears as he cries his. The emotional roller coaster continues, when he cries in pain or frustration i hold back a cry with hopes to express to him strength and stability....yet when simple sounds of his weak voice whisper "ephant, zebra and anda" there just is not an "emotion army" big enough to hold back my tears.