Keeping us on our toes...

It's been crazy the last few weeks! We went to the cardiologist on the 4th of June and the news was the same. NO CHANGE in his pulmonary hypertension. So our cardiologist (Dr. H) talked with our pediatrician (Dr C) and another cardiologist up at Primary Children's and they decided together that Maximus should be seen by a pulmonary specialist. So we called the pulmonary specialist to make an appointment and they gave us the run around. So because Dr. C was out of town his co-parenter (Dr. J) in the office told me to come in and he would check Maximus's weight and vitals and give them a call and have them get us in. So I took Maximus in to see Dr. J (who is well aware of our situation and we've seen before) and I was so worried about his weight. To my surprise he was 12 lbs 1 oz! We finally hit the 12 lb mark! Yay! Maximus was also showing off and very social and talkative while there and Dr. J was really surprised how active he is and stuff. Kids with pulmonary problems are not active and tire quickly. My little man only stops moving when he is asleep! 

This is a video of him standing on a chair by himself. He was loving it!

The next day the pulmonary clinic at Primary Children's called me to make an appointment with Dr. U (a pulmonary Dr.) but they wanted me to call and get an appointment with an ENT (ear, nose, and throat) specialist first and see them before proceeding with an appointment time. So I called the ENT specialist also at Primary's and told them that Dr. U (the pulmonary Dr) wanted Maximus to be seen by one of their ENT's before making an appointment. I hope this all makes sense. I know it's kind of confusing! Even in my own head! Needless to say we have an appointment with the ENT specialists (Dr M) on the 26th of June and then with Dr. U (Pulmonary) on July 5th. 

Maximus is now 6 months old! Today! I can't believe it. Where has time gone? He is getting so big. He thinks he is bigger than he really is too.

At 6 months he:

- is ALMOST rolling over!

- Loves to go swimming (even went down one of the slides at 7-peaks with Daddy a few days ago and loved it!)

- stands at the couch by himself (I'm just behind him) and plays with his toys for 10-15 min at a time

- is also almost sitting by himself

- Loves to help mom do laundry

- STILL pulls his oxygen off of his face!

- Still loves avocado

- jabbers and makes a lot of noises

- is getting a second tooth

- notices toys in his peripheral vision and picks them up

- grabs onto anything and everything within reach and puts it in his mouth, even my hair! 

- still hates tummy time!

Yesterday was his 6 month check up. He weighed 12 lbs 3.5 oz! I was so happy because the last 10-12 days he has not had more than about 10-12 oz a day. He just would NOT eat at all. I was worried Dr. C was going to order a feeding tube back into him, which I would have refused. But to my surprise he said he wasn't worried about it because he did gain even though he hadn't eaten much and he thought maybe he was too backed up (even though he poops once a day) to want to eat. So he told me for the next three days to give him Miralax 2 times a day and get it all out of his system and he should gain his appetite back. It seems to be working! But I feel bad for the poor kid. He is such a happy baby though I am spoiled with how good of a baby I have! He is sleeping completely through the night now! I am getting up at 3 most nights though and giving him a bottle just to get the extra calories in. But he stays asleep while I feed him and burp him. Also at this appointment we found out that he may have to wear a helmet. So we have that consultation on July 3. We are not too happy about it, but we would rather him have to wear a helmet than have surgery to correct any problems he may be having with his skull and brain growth. We also had to go to the hospital today and get an ultra sound done on him to see if he had his left testicle because Dr. C has never been able to feel it and it has never come down. The news on that is he has both of them, but they are both pretty high up in the canal and haven't dropped down . If they don't drop by 12 months old he may have to have surgery to pull them down and tack them in place. So I'm praying that they do so we can avoid another surgery. Also on July 2, we will see an ophthalmologist (Dr. V) and we will see how his vision is going! I am excited and nervous about that appointment. 

So to break it down a little better here are dates of appointments and Dr's and I will seriously try to be better at updating more so it's not so long and confusing.

Tuesday June 26th - Dr. M - ENT (ear, nose, and throat)

Monday July 2nd - Dr. V - Opthalmology

Tuesday July 3rd - Orthotics Specialist (helmet)

Thursday July 5th - Dr. U - Pulmonary 

And then we will follow up with Dr. C - our pediatrician on July 12.