11 Months Old

Cameron is doing great still at home getting to be such a big boy @11 months! We are continuing to follow up on the pleural effusions with an X-ray by order, because we are changing his formula. New fat content in his diet could set off a reaction very easily according to other cases. We are cautioned to take it slow because we don’t want to start all over again with the chest tubes. Cam is on half enfaport and half gentlease which is a normal baby formula with real fat. He is still having some tummy troubles with the changes; but it’s getting less severe I think, because at one point there were tears.

Cam is amazing just growing along now crawling EVERYWHERE… He can’t walk yet but pulls himself up on just about anything and if we hold his hands he will follow along with us or direct us. Cam has two bottom teeth that are looking good but hard to catch in a photo. Cam makes these hilarious faces as he licks his little teeth investigating what they feel like on both sides. He does like to brush his teeth or should I say gnaw on the tooth brush lol. I put him in a swing at the park after I used half a pack of wet wipes to clean it and it paid off he loved it. He is over most of the baby toys and will only play with cars, trucks and big boy toys or Mickey Mouse stuff. Speaking of big boy toys Daddy put him on a real John Deere tractor see the picture below.

We cannot believe he’s going to be one year old next month. It’s been crazy with everything happening back to back it feels like to me. Anyway we are so excited about his birthday and we decided race cars would be his theme. We will also toss in some Disney Car items like Lightning McQueen because he really enjoys watching the first movie over and over again. Thank you for all of the continued thoughts and prayers for our family again we appreciate the support.

Happy Mothers Day

Happy Mothers Day to all and I hope yall had a great weekend! I’m sure proud to be a Mom this year to the most amazing little man> Cameron. Cam’s follow up appointment Friday went well his X-ray looked good again. We are now allowed 1,000cc for daily fluid due to his weight increase – 19lbs. However, we are still not allowed any fat in his diet for one month. We go back in two weeks for an X-ray and more instructions, they want to keep following him since we had a few repeat visits concerning the pleural effusions. Cam is on full 20 calorie Enfaport which is low fat baby formula and he still gets baby food only fruits and veggies three times a day. Some of his meds have slightly increased too. We also have a regular pediatrician appointment coming up Thursday to see how he’s doing as far as they are concerned for him with vaccinations etc.

Cameron is having some tummy troubles changing over from the Tolerex to the Enfaport formula. Not to mention he cut his first tooth on the bottom row in front and the second isn’t far behind. Cam is getting better at playtime sitting up great, trying tummy time attempting to crawl but only revving up, pushing his favorite cars around and putting drivers in the bigger toys where’s there’s room for one. We practice some walking while I hold his hands and he is pulling himself up real good on the table toy so we don’t think it will be too long until he’s running around. Cam loves to spin the wheels on any car toy and he enjoys watching the Disney Cars movie over and over like really intensely watching it. Cam is making a lot of jibber jabber noises and there’s almost a ‘hi’ but not yet purposeful from what I see/hear. We enjoy being outside whether it’s in the backyard or at a park so yes he is a little sun baby and we do use baby lotion for protection.

Cameron had an accident on a new ride on toy Grandma Crusty (Tricia Mogg) and I tried out last week. He has what looks like a busted nose from tipping over the toy landing face first on the floor all because he wanted to touch the back wheel of the toy. The toy actually had a hard plastic safety waistband at his chest height much like his bike but that couldn’t stop him from falling over because he is a little top heavy (head heavy). Crusty and I were both standing right in front of him admiring how interested he was in the new toy and neither of us could catch him fast enough it was so extremely upsetting! Anyway he is fine but he has a noticeable bruised line across his nose and the toy is of course gone…

Fun in the sun!

Cameron’s follow up yesterday for the pleural effusion(s) went great! The X-ray looked good and they even said the right side looks less hazy and more clear then before. We are now allowed to change his formula from the Tolerex to Enfaport which has some fat and at least it is a baby formula. We are gradually changing his bottles taking away the Tolerex which he doesn’t have trouble drinking to introduce the new flavor of Enfaport which in the past he outright refused even starving. He was doing ok with half and half so we will see by the end of this week how he handles all Enfaport. We are still only doing fruits and veggies with his baby food and Cam is funny taking only a few flavors and having a fit over others, but we are set to keep this ones little heart as happy as possible. Sweet potatoes or mango for breakfast, squash for lunch and green beans for dinner. Squash is his absolute favorite and he really goes for the spoon!

Cam has been enjoying his baby pool time and park outings with the water fountain as well as a visit to his buddy Dylan’s for some bubble playtime. We have a Pediatric Cardiologist appointment Thursday which we hope goes smoothly, and one more appointment for the pleural effusion(s) Monday just to make sure the additional fat from the change in the formula does not set anything off. Thank you again for following our little man and giving us all the support through best wishes and prayers, we appreciate it!

9 Months Old – Portraits

Cameron had his doctor appointment yesterday morning at Chnola. Cam had an X-ray which they said showed no fluid. They want us to come back for one more visit Monday then we will be released from this latest pleural effusion issue. We are still on fluid restriction but he can now have some low fat baby formula enfaport introduced to his diet which is a great step towards a regular diet. He can have half tolerex and half enfaport now then later all enfaport just so we take it slow. After awhile of enfaport if there are no signs of trouble we can then move forward to regular baby formula. We are still only allowed baby food with zero fat continuing with a menu of fruits and veggies – favorite is squash. Also, we have an appointment with his regular cardiologist next Thursday. Cam is doing so great and we are hoping this is it for his Glenn surgery aftermath.

Please enjoy Cam’s 9 month old portrait pictures I just couldn’t help myself posting these adorable photos! You can really see he enjoyed being in that bathing suit exposing his chest and those battle wounds… what a truly strong little man!

Another Weekend Home

Cameron had a wonderful Easter weekend with family and he is still chest tubeless which is always great! We had a check up X-ray Monday and they cleared us for two weeks unless we see any reason to come back sooner. It seems like this round went so fast as devastating as it was to have it happen again. Cam is truly an amazing little man to go through all of it and come out smiling and trailing down his own road to recovery full speed, we are just so very proud of him.

Cam is still on fluid restrictions of 875cc daily now allowed with 3 jars of baby food at 4oz which makes a huge difference in our day. The baby food must be zero total fat and you have to watch the serving sizes carefully. We are going through veggies now squash being his favorite, not so much carrots and yummy fruits are to follow. He is still on Tolerex formula and if things continue to look good without anymore pleural effusion issues maybe in a few weeks he can be introduce to a real baby formula low fat of course like enfaport. Sleeping habits are improving with being home and having baby food to help with the feed limitations but some days are good and others are a struggle with late night feeds. We had a regular pediatrician appointment for a vaccination and a PKU test last week. We are still on a slow schedule with his vaccinations. The PKU test is a repeat since he had a blood transfusion for his last surgery. Also, we have another hearing and vision appointment later this week. Cam’s current medications are aspirin, lasixs, enalapril, sildenafil and zantac. I think that’s it… if there’s any other questions just leave a comment and I’ll try to put it in the next post. We do see all of the comments and really appreciate the support and prayers.

Cam is attempting to lean forward to grab toys almost crawling but tummy time is lacking, however he enjoys standing and trying to walk. I can hold his hands and he will go along with me but in his own direction. He has also started to jibber jabber which is adorable and I’m sure we will be having conversations soon enough. The Easter bunny was very thoughtful and brought many nice gifts (from the family) we are thankful for all of them. The bunny brought a baby pool to the Hannan’s which was super fun to see him be a baby enjoying the moment splashing around carefree. Enjoy!!!

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Cameron is tubeless again!

Cameron got his latest chest tube out his right side Friday and our check up this morning went great. We aren’t due back until next Monday for X-ray which is awesome compared to twice or three times a week. We are excited to have this chest tube round over and hoping with all our might that it’s the last time… Yes we had a talk with Cam about all this and we think he’s over it too. Thanks for the continued support and prayers this was an extremely speedy recovery!

Cameron has been enjoying all of our walks, wagon rides and of course his bike rides. We even got to see Abita park’s water fountain in action which was so exciting and he was pretty jealous of the other kids running around but really enjoyed the day. Cam has learned to make a new noise and face much like someone blowing a kiss but so funny and sweet! Cam is really doing well for everything he’s been through and we are so grateful for every moment!

Auntie Laura gets married in Florida!!!

Cameron was discharged last Wednesday and we got permission to go to Florida to attend Nick’s sister and Cam’s godmother, Laura’s beautiful wedding. It was incredible fun and everyone was so excited to finally meet Cameron, because for so long we wouldn’t bring him with us to functions, due to his low immunity. We still need to be extremely careful with him because he is not up to date with his vaccinations, so being around children could be risky. We do our very best to wipe down everything he comes into contact with using Wet Ones to sanitize everything, like new toys etc. Don’t worry, he had his own co-sleeper bed to sleep in out there. It will forever be dangerous for him to get sick, especially anything that causes respiratory issues, but he will grow stronger as he gets older. Anyway what an amazing event! We were so joyful to attend such a wonderful occasion. Congrats to Auntie Laura & Uncle Augie. Enjoy the pics!