Hectic Days of Winter

Life has been hectic, so I really haven’t been able to update as much.


John is 11 months old now. It is hard to believe that a year ago I was just waiting for this little boy to come into the world, and our real journey with him started when he was just 2 months old.

John & Maddox at 2 months & then a month later
John with his BFF Maddox at 2 months & a month later

You can see a difference 1 month with a g-button makes. He is also with his friend Maddox who is 6 days younger than him.

John had some appointments the past few weeks Pulmonary, Speech Therapist, Physical Therapist, Occupational Therapist, and Pediatrician.

Dr. Chavez, the pulmonologist, is concerned that he is still having apnea events. At the time of his appointment John was not feeling 100% since he was having a lot of mucus secretions coming out of his trach. Dr. Chavez noted that his left lung had a slight crackling sound. She wanted sure to give him albuterol treatments 2 times a day for about a week. Dr. Chavez will be leaving as of the beginning of February, so we will be switching care to her partner Dr. Ogborn until her replacement comes this Summer.

Speech therapy is still on-track. There really isn’t much to say with speech therapy since John isn’t talking due to his trach. Speech is still working to get him to take more by mouth as well as work with his mouth muscles. The therapist would like for us to try to transition John to a sippy cup. As well as work with him on sign language skills. We used it with Joseph for the longest time before he would really speak.

Physical therapy is going well. John is working on trying to stand and use his leg muscles. He’s doing great! There are days he’ll work hard, and days when he won’t.

John in his new walker
John in his new walker

We bought John a walker from a nice lady in town. He likes to “beep beep” the horn. He’s figured out how to go backwards, we’re still working on forwards. He can’t touch the floor very well, but tries. We noticed on Jan 30th that he was trying to stand a few times while in it. This is comforting.

We had an appointment with his GI, Dr. Ramprashad. He wants us to try pediasure instead of whole milk since he has problems with the milk protein. We are to try a half and half mixture of formula and pediasure. His doctor said he currently eats at the age of a 6 month old. Dr. Ramprashad doesn’t want us to push feeding him more solids if he doesn’t tolerate it. He would prefer for us to just follow John’s lead on food.

Here are some photos from his 1 year photo shoot:

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