July update

Wow!  I have gone longer than I intended without a post!  Things are a bit crazy here, gearing up for the school year while maintaining meds and appointments, with a bit of summer fun sprinkled in.  I will have to apologize again for no pics, because I (embarrassingly) still don't know how to post them!  Yes, my husband is an all-things-computer-guru, so I see the hilarity of the situation.  Maybe I should put one of my children on that - I bet they could post them. 

Joel is OK.  He has gained 10 pounds and grown 3 inches in the last 2 months since we have been home! When we got home, he was wearing 12-18 months shirts and 9-12 months pants.  Now he is wearing 3Toddler shirts and 18 months-2Toddler pants!  We continue to be so grateful and humbled that God has let us be his parents.

The overnight hospital stay for the heart cath turned into a 5 day stay.  He is on oxygen for 12 hours per day at home and on medication 3 times a day.  Both of those are for his pulmonary hypertension.  We saw the cardiologist last week, and the device that they put in on July 1 is still in the correct spot (that is good).  His pressures in the pulmonary arteries are still pretty high, so we are just continuing the oxygen and medicine.  The doctor said that if they are going to work to bring down his pressures, it would not be a "quick fix".  We will be looking for slow progress over a long period of time.  So, I think heart-wise, we are probably in a holding pattern for a while.  We will see the cardiologist again on October 26 to reassess his progress.

Joel has an appointment tomorrow (Wednesday) morning to begin physical therapy.  I am hoping that he will begin to walk within the next year.  He holds our hands and takes several steps at a time, but he has to be highly motivated.  Motivating him is difficult - he would really love to sit and be lazy almost all of the time!

He got new glasses this month, and he is not impressed.  I think they look adorable, though!  Nights are still hard, but better than they were.  Falling asleep is not easy, but once he is asleep, he usually stays asleep for the night.  I think he sleeps much better since we started the oxygen, but he still wants to pull at all of the cords when he is falling asleep.  I usually sit in the rocking chair in his room until he is asleep or almost asleep and that helps.  Sometimes, though, it can take HOURS for him to fall asleep.

Eating-wise, he is drinking 1-2 pediasure bottles (from a baby bottle) per day.  Other than that, he is still eating mushed foods from a spoon, but has increased what foods he will eat.  Favorites are mashed potatoes, scrambled eggs and grits, pureed peaches and applesauce, yogurt, pudding, chicken casserole.  He does not like meat or vegetables, so I puree' those and sneak them into potatoes or casserole.  He can feed himself thicker mushed food from a spoon.  Also, he now will eat pretzels and broken bits of animal crackers or cookies.  He does not chew food.  He sucks on it.  This month, we have an appointment with an occupational therapist who is also a feeding specialist, so I am hoping she can help with that.  He will start Occupational Therapy regularly in November. 

Speech Therapy is on hold.  He has moderate to moderate-severe hearing loss in both ears and needs tubes.  The ENT was also planning to take out his tonsils at the same time b/c they are pretty large and we feel that he probably has sleep apnea (that would explain the better sleeping when on Oxygen).  However, the cardiologist has said that we cannot consider that for at least 3 months b/c of the anesthesia risk with these higher pulmonary pressures.  The speech therapist said there is really no need in evaluating for therapy until the tubes are placed and he can hear us.  For now, we are working on sign language.  He signed "More" last week when he wanted more food.  That was his first attempt at communication with us, and we were so excited!   I also think he nodded his head "Yes" once last week to answer a question, but I am really not sure.  He has not done it since then.

He slides around the house on his bottom, and he seems pretty comfortable with us and in our home.  He often slides over to me and climbs up into my lap.  He doesn't really show any affection yet, but he does let us hug and kiss on him all of the time and seems to like it, usually.  Joel is laughing a lot these days, but not really randomly.  We have to really attempt to make him laugh, but everyone loves to do that and there are always willing actors around here!  The kids play with him.  He doesn't really "play back", but he likes to be "played with".  The other day, Julia put him in her baby doll's playpen and he really thought that was funny.  In another week or two, I don't think he will fit there anymore!

All in all, we are seeing growth and change, and we are loving our boy!  Thank you for keeping up with us, but most of all, thank you for your prayers!