OUR FIRST TRIP TO JOHNS HOPKINS WITH MAX

Hello!! Well, we made it to Baltimore yesterday for our first visit to Johns Hopkins with Max. The trip was pleasant and uneventful. It took us about 8 hours because we stopped 3 times to feed Max and a few other times for food and potty. We easily could have made it in 6 hours if we didn't have to stop so much. What a beautiful drive! We got the kids off to school yesterday morning without a problem and headed out after that. We arrived here at about 4:30pm. We have a beautiful view from our hotel room over the harbor and the weather has been so nice, although very fall-like.

Last night, we met up with some new friends that live in Annapolis and have a beautiful LP daughter named Tessa (Hi Sarah!!). Tessa is so cute and has a million dollar smile :-) Any day now Max will give me one of those big beautiful grins!! Can't wait...he is warming up slowly...giving little half smiles and smirks here and there... It was so nice to meet another couple who is in the same boat we are with an infant with achondroplasia. Max has an adorable little girlfriend :-). I look forward to watching them both grow up.

This morning we got up nice and early for our 9am appointment with genetics. We left the hotel at 8am, although the Outpatient Clinic is only about 1 mile away...good thing because, despite the navigation in our van, we got lost... so, we didn't end up arriving at our destination for 45 minutes! What a system they have here...you walk in and get a wrist band from security (although no one checked are bags or anything) and then you go to another window and tell them where you are going. When you get to the right department, you go to another receptionist who takes your information. You actually take a number like at the deli department of the grocery store. Despite the numbers and all the different desks you check in at, it was very easy and very personable. Everyone was so friendly. We hardly waited at all to see either doctor (That was AMAZING to me!!!) When we got to genetics, we had a little scare when the nurse got Max's blood pressure at 140/61... I was having a panic attack until she repeated it with a bigger cuff and got a normal reading. We did NOT come here for any new diagnoses!

The geneticist, Dr. Hoover-Fong was great! She had lots of information to share and examined Max. She said his chest/rib cage is actually on the large size for achondroplasia...which is very reassuring to me. She said his mid face is only mildly depressed (Not something I would EVER have noticed-very common with this condition and can be quite pronounced) so she HOPES he won't have a lot of chronic problems with colds, ear infections. His head circumference is fine. She hates car seats because of the way their heads flop down, not just with LP infants but all infants. She said the Chicco carrier (like a baby bjorn) and the swing we have been using is fine and that the exersaucer will be fine in the future if we make sure to stuff towels in around him so it supports his back. We plan to just lay him flat in the stroller when we are out and about and not use the car seat unless we are in the car. Overall, she is very reassured by how things have been going in the past 6 weeks!!

They like to see kids back every 6 months, but we don't have to come that frequently (although we will!). They will set up all the specialist appointments for us each time we come. It is a very user friendly set up here. They will send us the clinic note from today with lots of educational information and will send that all to Dr. Phelps too.

After we left genetics, we went to see Dr. Ahn in Neurosurgery. Once again, painless check in process and very short wait time. He was very nice. He reviewed Max’s MRI in the room with us and said it looked fine, no concerns at this time. He felt his tone was normal (yippee) and was not concerned about the tremors/clonus that Max has. I have been SOOO worried about the tremors and the clonus but he said, with a normal MRI, there is nothing else to be worried about and it should resolve in 6-12 months… They are the result of his immature neurologic system (he IS an infant..) and that they will go away in time. He has seen a lot of people with achondroplasia because of the skeletal dysplasia clinic there so I feel reassured. That is really what this whole trip was about…REASSURANCE…luckily we didn’t have any true medical issues that brought us up here.

After our appointments we had lunch at Fogo de Chao (Brazilian Steakhouse-one of Eric’s favorite restaurants.) They had the most amazing looking salad bar I have ever seen!!! It was artwork!! And the staff all mills around waiting to be helpful. They pull out your chair and push it back in every time you stand up! I swear they would have helped me nurse Max if I needed it!!! Eric is convinced they thought we were VIP’s of some sort with all the attention we got! We are now on our way to DC. It is only about a 45 minute trip so we figured we would head up there and do some sightseeing! Max is hoping to meet the president!

So, we will see Peds Pulmonary tomorrow. She will review Max’s sleep study and assess his breathing. We see her at 2:30pm and then will get on the road to head back home. We miss Aiden and Emmi immensely!! It is tough to be away from them even for a day, but I know they are in good hands at home.

Well, that is all for now. I will update again after pulmonary tomorrow. Have a great day!!