Happy Birthday, Mitchell!

Standing up like a big boy- trying to get the ball

Grandma & Mitchell on his birthday

Day of his party, May 22nd

He didn't like the icing on his hands- "get it off, please."

Thank you, Amanda for the wonderful birthday cakes!

kids in Mitchell's new ball pit

Mitchell had his 1st birthday on May 20th- it's hard to believe it has been a year. We have so much to be thankful for- starting with the fact that he is here with us today!
Many of you have been following the blog from the beginning, but a quick summary of his year would be:
May- July: hospitalization at Children's in Atlanta- his first heart surgery & a general surgery for a fundoplication & feeding tube
August- back for 1 day in the cath lab in preparation for his next surgery
October/November- back to Children's for his 2nd heart surgery- hard to believe I can't remember for sure, but his stay was b/t 2-3 weeks- surgery-back to the cath lab for some additional modification- and a few complications...
December- back to children's for a revision of his fundoplication d/t a hiatal hernia
January- a quick trip to Atlanta just for f/u at the surgeon's office

His time at home, he is followed by amazing doctors- he has a wonderful Pediatrician & Nurse Practitioner & an outstanding cardiologist. We have been blessed with their close attention to his needs.

We are happy to say that he is doing well. At the moment, his primary concern is significant reflux- he spits up quite a bit. We are hoping to see this calm down again. It had improved, but was exacerbated again by a virus last month. At this time, we don't know exactly when he will need to return for more surgery. At some point, he may need to go to the cath lab to dilate the stent in his pulmonary artery. It is possible that it may be adequate until his next surgery. They will continue to monitor for any changes. We will take a trip to Atlanta sometime later this summer to replace his feeding tube, but that should be a simple thing. His next heart surgery could be anywhere from 18 mo. to 36 mo. of age, depending on his status.

We are enjoying all of the smiles & laughing. Despite everything he has been through, he is full of life! He loves his family & gets very excited to see daddy come home or grandma come over; his sisters get lots of smiles & laughs out of him. He enjoys the kitty & puppy, too. Right after my last post, he added "kitty" to his vocabulary; and after his party, he is saying "boon" for balloon.

His favorite thing is balls, so we got him a ball pit for this birthday- he has lots & lots of balls to play with. We attached a few pictures from our celebration.

1 year stats: 16 lbs. 9.6 oz; 27 1/2"

Thank you for all of the birthday wishes- He had mail every day the week of his birthday.

Cardiology Report & General Update

Mitchell had a follow up appointment & echocardiogram today.
He wasn't thrilled to have his echo today, so it was fairly limited; but Dr. Mehta felt that it looked about the same as last time. This is great considering he has been off of his Lasix (diuretic) for about 6 weeks. His sats were good- 89-90%.

Since his virus (shortly after Easter), he has had a lot more spitting up. We have been trying to accomodate for lost feedings, but he didn't really gain (I believe it was only 2 oz. since the last visit). He did grow 2 cm in length, though- now on the 2nd percentile for length!
We are able to stop his Aspirin now, so we're hoping that will help his stomach.

Mitchell continues with Physical Therapy once a week & Occupational Therapy twice a week. He will be getting re-assigned to a new Speech Therapist, since his previous therapist relocated. He is making progress! He is sitting up unassisted- last session he sat the whole time without being helped. He LOVES to play with balls- definitely his activity of choice. So, we have lots of balls- different sizes/weight; and working on strengthening his arms and legs. I don't know how much I have mentioned previously, but he does have weakness on his left side. We noticed leaning, etc.. after his hypoxic episode in the fall. We are very thankful with his progress, considering the concerns we had. He is using his left hand more and more- he used to primarily use his right hand and pass off everything to his right when we'd give him things on his left; but he is starting to pass back to the left & tolerate picking up more weight/larger items with his left hand.

His current vocabulary is "ba" for ball (quite frequently), mama, dada, "hey-yah".
He will wave bye, give '5' & play peek-a-boo.
We really enjoy these milestones!

It's hard to believe that Mitchell will be '1' in 3 short days. No big plans- probably just a nice family gathering on Saturday. One of Juliane's friends from work wants to make Mitchell a birthday cake, so we'll be surprised with some sort of 'ball' cake.

Thanks for all of the birthday wishes & cards!
Mr. & Mrs Brock, Mitchell loves his singing card! He plays it over and over again.

Hope you all have a Wonderful Week!

Still trying to recover

Ted left for a convention in Orlando on Sunday. Unfortunately, he caught the kids' virus before he left.
Monday was a follow-up for my arm; my doctor was concerned about a blood clot, so I had a doppler. Thankfully, it was negative. Never would have guessed inflammation/infection from a blood draw could be so painful. I'm happy to be on my last day of the antibiotic as my stomach is feeling the effects of it. My arm is still hurting, but it has definitely improved.
Tuesday was a visit to the pediatrician. Thought Mitchell should be checked, since it had been 10 days of the virus and he was starting to seem more fussy. Glad we went- caught the beginning of an ear infection. I was pleased with his weight especially since he has been spitting up quite a bit from the congestion. He was 16 lbs. 2 oz. The girls were 17 and 18 lbs at a year. Hoping we can match the 17 by his birthday next month.
We were happy to have Ted home from his trip last night- just wish he was feeling better! Hoping it doesn't last as long for him. He is due back in Orlando on Monday.
I don't know if it's the infection/antibiotic/lack of sleep or if I'm getting the virus, too; but I'm not feeling well. Thanks to mom for coming over with dinner last night & for helping with the kids.
And thank you to everyone who has been praying for us!

Fighting off germs

We don't have a lot to report, but figured we were due for an update:
I didn't take Mitchell for his weigh-in or therapy this week due to a virus. Mackenzie started first, then Mitchell- nothing too bad- runny noses, cough, & a short-lived fever. Madison has fared the best with a hoarse voice & minimal coughing. It doesn't seem to slow Mackenzie down too much; Mitchell, however, doesn't do to well with the congestion. It is contributing to more spitting up, not sleeping well & just general fussiness. Hoping we're getting to the end of it.
Now I (Jodi) am praying that an infection I have quickly resolves. After a routine blood draw, I now have a nice red, tender & bruised line down my right arm. I started on an antibiotic last night & saw the doctor today. He said he'd give me a couple of days to see if it helps, but if it gets worse over the weekend or is not better by Monday, I was instructed that I will need to go to the hospital for further tests and IV antibiotics. This would be less than ideal given my responsibilities, so I'm hopeful that the antibiotic is just the right thing. I was also instruced to take aspirin just in case there is a clot contributing to the problem.
Mitchell's next cardiology appointment is Tuesday, April 26th. Once we're passed the virus, we'll drop in for his weight check.
It's hard to believe that we are approaching 11 months next week!
Thank you all for following Mitchell's progress & for praying for our family.

Happy Easter!

Encouraging visit

10 months old

After Madison's 3rd grade program

Yesterday was a full day with therapy and a cardiology appointment including an echo.
We were very thankful with the report-
Mitchell was 15 lbs. 8.6 oz.- He continues to have a steady gain & growth curve- still below the 5th percentile curve, but great for him.
We have been eagerly anticipating his echo. Things looked good considering his diagnosis. His ejection fraction was 57%. His oxygen saturation was 88%.
He is finally much more comfortable overall- he seems to have loosened up the wrapping of his esophagus and the retching is very minimal. We're getting lots of smiles & babbling.
He is making some progress with feeding attempts. Although, he isn't consuming enough to count nutritionally; he is moving in the right direction. Until recently, he would gag with any feeding attempt. He is now swallowing small amounts of food. We are working to increase the exposure & amount of intake.
Close friends of our family, Budd & Donna stopped in for a visit last week. Mitchell was sweet and let Donna hold him for quite some time. It was so nice to see them & introduce them to our little man. Thanks for taking the time to come!

Hope you all have a wonderful day!

General Update

Thank you to everyone checking in on Mitchell- sorry for the delayed update.

Mitchell's next Cardiology appointment including an echo is March 23rd.
His last echo showed some change; we are eager to get this report.
Although not "on the charts", his weight & length are back on an adequate curve. We are happy to see progress. There is some variance between the Cardiology and Pediatrician scales, but his weight is just shy of 15 lbs.
We go back to the Pediatrician next week for his monthly Synagis & another weight/sat check.
Mitchell continues therapy on a weekly basis- I would say the most progress is with his social skills. He is interacting with them much more; he even let his physical therapist hold him yesterday! He seems to be doing well overall- he is behind with his gross motor skills (not at all surprising after all of his time spent in the hospital). He can sit up briefly by himself; for a fair amount of time with minimal support. He has rolled over by himself once- not very interested; he does roll from side to side as he wishes. We have noticed more communication recently- "ba-ba-ba" for a few weeks; and "mama" just this week. He will also give "5", wave & play peek-a-boo.
Things are finally starting to seem a little more "normal". We are so thankful for Mitchell & continue to pray that we are receptive to what God has for us through it all.
Thank you for your love & support!