Dr. Brown Has Left the Building

Dr. Brown bottles, that is.

I'm so happy to say that Lincoln is no longer taking a bottle as of October 11th! I love not having to wash and wash and wash bottles and nipples, and all the other parts that come along with the Dr. Brown bottles. Not too shabby to be weaned from the bottle at 17 months, for a kiddo with a start like Linc had.

While this is great news developmentally, this month will be challenging as far as growth for Lincoln since he is still picky about drinking milk/formula from his cup. He has been drinking water from a sippy cup since about 6 or 7 months old, and occasionally drinks water from an open mouth cup, too.

Over the past month or so I really started to push whole milk in Lincoln's sippy cup during meal times. I could see the end of the bottle coming and was starting to get a bit nervous that he might get to a point where he didn't want his bottle and didn't want to drink anything but water from his cup. And then we would really he hurting in the calories department.

Thankfully, Lincoln stepped up to the plate and gradually started drinking whole milk during meals. I just mixed increasingly higher concentrations of water and milk, since he loves his water so much. I had tried this in the past without success, but I just didn't know what else to try, so I gave it another go.

That being said, Lincoln is still playing catch up with his calories. Whole milk is not even close to the kcals in his formula (18 per oz vs 45 per oz). Even though Lincoln was only drinking 4-6 oz of formula in his bottles per day, that is still 180-270 kcal he isn't getting. It may not sound like a lot, but for Lincoln, it is. He needs around 1000 calories per day to catch up on his growth, so every little bit counts.

So far in the past two weeks or so, Lincoln has had some really stellar days, drinking 10oz of whole milk, and some pretty poor days, drinking about 1oz. Overall, I do think that he is eating more solids without his formula, and he is definitely eating more consistently at meal times. I think he is just feeling more hungry, and that is the best motivator for Lincoln to consume his needed cal.

So far, Lincoln hasn't gained any weight since dropping the bottle. He has maintained though, he's right around 19lbs for over a month. I am always so excited when Linc reaches another pound gained!

I am still hopeful he can do this transition to whole milk. His dietitian and neonatologist at SLCH are happy that Lincoln is making progress by dropping his bottle feeds, and they agree to give Lincoln a few more weeks to see if he can gain weight on just whole milk and his Duocal supplement. Come on, Linc!

Pumpkin Patch

I cannot believe that Fall has arrived already! It's almost Halloween time, so Dan and I took Lincoln out to our local Pumpkin Patch about two weekends ago. Although all of us were getting over a nasty cold, the weather was just perfect and I thought the the patch would be less crowded if we went early in the season.

Lincoln's first trip to "the farm" was so much fun. In addition to picking out his own pumpkin, he was also able to see some farm animals for the very first time. He loved when I made the noise for each animal since we have been working on these at home. We saw a few goats, a pig, a cow, sheep and a llama!

Lincoln also enjoyed playing on giant tractor wheels and "riding" tricycles (sitting on them as I push). Lincoln liked the slide they had for toddlers, although it would have worked better if we had been on potato sacks like they had for the big slide. We walked through the corn maze and crawled into one of the hay bale mazes, which is pitch black! Lincoln went right in, following Daddy. He's so brave. We did cheat a little by using the flash on the camera for some light since we forgot to bring a flashlight!

It was so wonderful to be able to get out as a family, which we just couldn't do last year at this time. Lincoln was always hooked up to his oxygen and taking Lincoln out unnecessarily during cold and flu season was unheard of then! It's so much fun watching Lincoln grow up and get stronger and be able to enjoy, well, life!

Enjoying the goats

"Careful, the goats would like to nibble your hands."

Lincoln led the way through the corn maze

Cutest farmer I've ever seen, for sure!

Lincoln wasn't too sure about this narrow passage through the hay where I couldn't fit next to him. He went through though. I just love his face.

Smiling with Daddy in the hay.
Not too bad of a picture considering this was taken in the dark! 

that's one BIG wheel. 

searching for a good pumpkin

Found the perfect one

Family pic

on the way home after enjoying some fresh carmel, still stuck in his teeth

Home Therapy on Pause

I often forget to include info on Lincoln's home therapies when I update, so here is a much needed post about that.

This past Monday we held Lincoln's 6 month review with MO First Steps early intervention program. Lincoln has been in First Steps for one year, so this is our second review. This is just a regular meeting between all of the therapists currently involved in services, the parents of the child receiving services and the family service coordinator. So for Lincoln that included his Physical therapist, Occupational therapist, myself and our coordinator. (Linc's Registered Dietitian was not able to attend.) We discussed Lincoln's medical health overall, his progress in all areas of service and any concerns I had.

Needless to say, Lincoln is doing fantastic physically! He is walking, basically running, kicking and throwing balls, bending over to pick up objects, helping to dress and undress himself. So Physical Therapy was comfortable to say that Lincoln doesn't need regular monthly services anymore!

Lincoln is also going great from an occupational therapy standpoint. His Sensory Integration Disorder (SID) is improving. He now is able to play with Play-doh, shaving cream (in small doses/thin sheets), play in the grass with bare hands, and eat soft cookies and moist cakes. (I know you're thinking, how terrible to have not been able to eat those things in the past! I totally agree!)

Not to mention that Lincoln no longer needs very specific movement to calm himself. (Oh, the days of the vigorous bouncing are over! MamaRoo if I had only known about you a year ago.) Lincoln also shows us that he is comfortable in the world around him now by enjoying car rides, baths and getting dressed.

Lincoln may show signs of some sensory overload for some time still, like gagging on food that has a certain texture he isn't used to, like pudding for instance, but he has shown consistent improvement and the ability to self-integrate, which is the ultimate goal. I have heard that many school-aged children are misdiagnosed as ADHD who actually have some form of SID. I am so happy that Lincoln has gotten the early intervention that he needs to help address his sensitivities and hopefully we can avoid problems in school, and life, later on.

Also in the category of Occupational Therapy, Lincoln has great skills to allow him do everyday things like most toddlers. He feeds himself well, he is starting to speak more and more, and he has quite the pincer grasp! Because of all the the above, Occupational Therapy was comfortable to say that Lincoln no longer needed his monthly visits!

We also discussed Lincoln's continued need for dietitian services. Since his weight is still below the charts, I enjoy having the nutritional guidance a Registered Dietitian can provide. But, due to the availability of a RD through SLCH CDH clinic, it was agreed that Lincoln no longer needed monthly dietitian services through MOFS! ( I will be discussing Lincoln's diet and growth in more depth in a post to come.)

So, did you catch all of that? Lincoln is going fantastic, and no longer requires home therapy at the moment. Lincoln's case has been put on what is called Service Coordination, which means that his case remains open in the MOFS program, but that he is not currently receiving any home services. I plan to re-start Parents as Teachers for Lincoln now. I had stopped these visits about a year ago since Lincoln was getting home therapy the service seemed redundant. We were also overloaded with appointments!

Once accepted into the MOFS early intervention program, you are in it until 3 years of age, at which time the school district takes over if necessary. Of course, I always have the option of taking Lincoln out of First Steps all together, but that seems silly to me since we have Service Coordination as an option. This way if there are any concerns between now and 3 years of age that cannot be addressed by P.A.T. I can always call up our MOFS service coordinator and set up a planning meeting.

I cannot say enough good things about the First Steps program and specifically the people who directly worked with Lincoln. They helped me in so many ways over the past year, and I know Lincoln would not have come this far, this quickly, without their guidance. It is wonderful to know we still have them behind us, if we should need to reach out to them. And it is even more wonderful to know that Lincoln no longer needs to see them regularly! Now they have even more time to help all of the other children who benefit so much from home visits.

Thank you First Steps!
Congratulations Lincoln!

Planning for Surgery

Lincoln had another follow up appointment with his urologist this past Friday and it went really well. After looking to see how well Lincoln has healed up from his last surgery, the urologist said she is very optimistic that Lincoln will only need one more surgery! Of course, we will have to see how it goes on that day, but I was happy to hear she is optimistic. It would be wonderful to only have to put Linc through anesthesia and intubation one more time! Well, I'd rather not put him through it at all, but unfortunately it's necessary.

This next surgery will be outpatient, same as last time, unless there are complications with Lincoln's respiratory status. Hypospadias repair stage 2 is scheduled for December 5th. Please, keep Lincoln in your thoughts!

Please Post Your Questions!

I would like to announce that Lincoln's doctors at St. Louis Children's Hospital and the Fetal Care Center at Barnes Jewish are going to be holding Question and Answer Session for CDH families. This session will be recorded and will hopefully contain all of the common, and not so common, questions families have when facing a CDH journey with their child. This recorded session will then be available to future families who have just been diagnosed with this condition.

I am hoping to help collect some of these questions to help the doctors prepare the session from all of the wonderful CDH families that follow Lincoln's Blog, or even questions from friends and family who want to better understand this defect. It would be so helpful if you could comment on this post with any questions you have now or had at any time during your journey. I will keep every one updated on the status of the session as it progresses.

Thank you so much!