John did receive the Trilogy ventilator from Philips. Thankfully we got the quieter, lightweight version. It’s also a newer machine. It is supposed to help with his sleep apnea or those times when he is sick. Another praise is that we only had to use the CPAP setting instead of it continuosly breathing for him. It’ll only provide an artificial breath if he needs it.
On Monday (11/17), John saw Dr. Ramprashad, his GI doctor. We have actually changed his calories from 27 calories/oz to now 30 calories/oz. John’s doctor says he has reached a plateau and isn’t really gaining so we need to boost his calories.
Joseph received stitches in his chin. On 11/20 (Thomas’s birthday) I received a call from the school nurse letting me know that Joseph had busted his chin open on the slide on the playground at school. She mentioned she believed it would need stitches, but I could come up and make the final decision. Of course I go to the school. When I see him and how it looked I decided he would most likely need them too. I asked my mother, who is an RN, to look at it to let me know what she thought. She took one look and said he would need them. He received 3 stitches. They will be staying for 7-10 days. Then they can come off.
On Monday (11/24), John had his 9 month well check appointment. He is on track for a 4 month old physically. He weighed 15lbs 11oz and was 26in tall.
On Tuesday (11/25), John will get a new trach which should work better with his ventilator while sleeping. Currently the one he has will easily disconnect if he moves. The new one will have an extra extension to give him some wiggle room when he rolls around in his sleep. It’s is called a Bivona Flextend for those trach enthusiasts out there.
With everything going on in our lives (even just the day to day events of being a mom and wife) there are times that you just need to stop, slow down and be thankful for all that you have.
This past year I have felt that I have been tested with my strength in just letting go and letting God take control. It is hard when you expect something and then your life is turned around because what you expected is actually different than what God had planned for you. When you become pregnant you never plan to give birth to a child with any special needs. You dream of holding your child in your arms and all the things they will become. So when John was born and we were presented with all of his problems it was a shock. We were expecting a normal happy baby just like anyone else would. Then as time passed by, we started to realize his problems.
I am thankful that God provided me with a loving and supportive husband. He has been a rock when I have felt ran down from handling everything. Sometimes I just need to sit next to, talk, hug, or cuddle to just lift my spirits. Thomas seems to know when I need it the most because he will just come up to me and hug me.
My 2 older boys have been wonderful too. They show such a love for their brother. They look past all his wires and tubes connected to him. They don’t see anything, but their little brother. Alexander just wants to play and hold him. Joseph will want to hold him and give him toys to play with.
What blessings we have!