(Believe it or not I have attempted to finish this note to you 4 days this week. Now that it is 2 a.m. and I am acting as your night nurse until daddy switches me shifts I am determined to finish. Sorry to any of your fans that have been checking daily for mommy to get her act together. Daddy promises he will write you a note this weekend recapping this week so we will be all caught up).
Let's pick up on "the good" part of our story from last week. After you got through "the ugly" on Sunday you started to perk up over the next few days but we're 100% yet. Wednesday was a big day with 4 different doctors waiting to see you downtown. Mommy and daddy started the morning super early to get things ready and we had our fingers crossed that you would wake up in a good mood. As luck would have it you slept all the way to the hospital and woke up all smiles as we headed into Children's.
Your first appointment was with Genetics. This was a doctor we hadn't seen before because unfortunately Dr. G who you had seen so many times only sees kiddos like you while they are in the hospital not as an outpatient. This new doctor asked mommy and daddy a lot of questions about you but didn't have much of anything new to tell us. He was AMAZED at how interactive you are despite your poor hearing and complex medical history. As we have heard from so many people you are quite impressive. He wants to see you once or twice a year to keep tabs on how well you are doing but as of now feels that mommy and daddy have all our bases covered as far as which doctors are involved in your care (or perhaps the easier list to make would be which doctors aren't involved).
Next we headed to a clinic where we were able to see your urologist and endocrinologist in one visit. Dr. Reddy is your urologist and has been a doctor of yours since before you were born. He is the one single doctor that has personally followed you since they discovered your complexities two weeks before you entered the world. Mommy and daddy think the world of him and based on the smiles you give him I'm guessing you don't mind him either. He feels that for now your bladder and kidney status is stable and although we know you will need a surgery for this in the future we need you to grow before that is a possibility. Until then we will have to continue to cath you, take your medicine, get ultrasounds and follow up with nephrology to make sure we are doing all we can to protect your kidneys. You will also have to have another surgery with Dr. Reddy in the next several months to work on bringing your boy parts down where they need to be.
This is where endocrinology comes into the picture. Dr. Rutter is your endocrinologist and she's a pretty smart lady. She suggested that we give you some hormone shots to see if it would help get things moving closer to where they needed to be so it will be an easier surgery for Dr. Reddy. She talked about all the possible benefits with mommy and daddy and the only real down side is that you have to get a series of 6 shots. Dr. Rutter was worried if you could handle that until daddy and I reminded her that you were used to getting 2 shots a day for the past 6 months so this would be nothing. We will start those some time in the next few weeks but I know you will breeze right through them bubba. Dr. Rutter said your thyroid levels were perfect on the dose of medication you are on so no other changes from her department. Check...... 3 doctors down, 3 good reports, and 3 appointments worth of a smiling Connor. Mommy and daddy couldn't be happier.
Last stop of the day was immunology. Mommy has been more worried about this follow-up appointment than any others. Mommy and daddy were so happy to see that we were scheduled with your favorite immunologist from your time in ICU, Dr. A ( I know you have more than one Dr. A, sorry it's confusing). The immunology doctors already know that you have a very small thymus. A thymus is responsible for creating and directing your germ fighting abilities. Although your thymus may be small it has the potential to do a complete job. As Dr. A explained it, "you can get a great education from a one room school house." Early tests showed that your body does know when infection is present and it calls the Army to fight. The question has been do you have the right ammunition to fight specific enemies. The only way to test for this was to give you some vaccines and then do some tests to see how your body responded. This process takes several months so we have been patiently awaiting and trying to keep you extra safe from germs. Dr. A said that so far all of your results looked normal. That is AMAZING news. You have a lot of vaccines to get caught up on and now you have been cleared to start getting most of those. There are still a few we have to protect you from until you are a year old and we can do a more specific test to make sure they are safe. Mommy and daddy are overjoyed by this information. We know it means that we still have to be protective of you around germs but hopefully it means that as you get bigger, stronger, and rid of some of your equipment you will be able to play with other kids and stay healthy. Thank you to everyone who said extra prayers with mommy about this appointment.
Grandpa's always trying to sneak you treats
During one of your therapy visits you had a very special visitor here to cheer you on. Your Great Aunt Marty was able to meet you for the first time. You sat on her lap and seemed to take particular interest in checking out her super cool motorized scooter. Your Great Aunt Marty is an awesome inspiration for you. She has had more therapy in her lifetime than anyone Mommy knows. She has achieved goal after goal when so many times people have told her it's impossible. I hope that you have half of the drive and determination that she has always possessed. Mommy and daddy were so happy that you two were finally able to meet.
*(I have a great picture of you and Marty but I can't go downstairs at 2 am to upload it on the computer so I'll add it tomorrow.)
Friday night we had a fun celebration for your Uncle Scooter's birthday. He and Auntie Beth came to Grandma and Grandpa's house and we all had a nice dinner. Although it was Uncle Scooter's birthday party you still kind of became the star of the show. You seem to have a way of doing that these days buddy. This may have been the first time where Uncle Scooter beat out (or at least tied) Auntie Beth for face time with you. Your Uncle Scooter is a nut but you seem to enjoy his crazy noises and silly games (as long as you get some time to flirt with Auntie Beth too).
Watching cartoons waiting for the party to start
Saturday morning you had another appointment. This time Grandpa and mommy were your escorts. Grandma had stayed up most of the night before being your nurse and daddy had to work (and was scheduled to stay up with you Saturday night). Luckily we didn't have to go all the way downtown for this appointment. This time we saw the nephrologist who is the kidney doctor I mentioned earlier. He feels that your kidney function is stable at this time but is concerned that you have a little too much calcium in your kidneys as a result of one of the medicines you take. This medicine is from cardiology and they plan to work on weaning it before long so hopefully that will only improve things for your kidneys. Mommy had not met this doctor yet but he was very nice and thorough. He even took mommy in the back to look under the microscope with him. Boy the things mommy is learning these days.
These appointments are tiresome
Because you had been such a star at your appointment in the morning and happy all afternoon mommy and daddy decided to try another first with you. Saturday evening we went out on our first non-medical outing.Where did we go you ask? Champs of course. This is one of mommy and daddy's favorite restaurants. By the time we decided to take on this adventure it was almost dinner time. Luckily your Grandma and Grandpa stopped their yard work and were willing to go to the restaurant before mommy and daddy to get a table. The three of us were able to stroll right in and join Grandma and Grandpa who already had delicious nachos waiting for us. Yummy! You slept through most of dinner but were pretty content when you did wake up. It was an amazing feeling to have you out of the house and sitting right by the table in your stroller with the family as part of our dinner. This was a very big deal to mommy and daddy. We are so thankful that Grandma and Grandpa stopped their plans once again to help us out. We are also very thankful that you behaved. There are so many fun things we want you to experience outside of the house and hospital. This was a big first step. Good work little man.
As if Saturday night wasn't a big enough adventure mommy and daddy squeezed in another first for you on Sunday. We went for a walk around the neighborhood. At first we didn't think it would last long because you still aren't a big fan of the bright sunlight but after just a try or two you decided your sunglasses weren't so bad and away we went. We walked for about an hour. Part of the time you took a power nap but the rest of the time you sat in your stroller happily looking around. You never stop amazing us. Just think if we could go out to dinner and for a walk in one weekend imagine what we could do next. All of this excitement is exhausting and this has been another long week but I'll let daddy fill you in on that in the next day or two. For now you should rest sweet boy. Life has lots of adventures ahead for you. Some of them good, some bad and hopefully only a few that are ugly.
Mommy and Daddy love you more than words can say Connor.
-Mommy
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