We're getting there!

Molly has had a gtube since she was 7 months old. Her belly was never fed for about the first 6 months of her life which made it very hard to gain weight. The fact that she was on a low fat formula for about 6 months didn't help matters either. But we did what we had to do to get her better. No regrets with anything so far. We also say that the trach was the best medical decision that we made for Molly but the gtube definitely runs a close second. Especially because it has taken so long to get her eating by mouth. She is 27 months old and we still rely on that tube for some things. When Molly came home from the hospital back in January 2011 she was on continuous over night feeds and I can't remember what her day time feeds were but it was pretty frequent. Growth and Nutrition has helped us transition from low fat formula to regular formula and from continuous feeds to bolus feeds. Then we started spreading the feeds out further apart hoping she would get hungry forcing her to eat by mouth. It has been a very long battle. Molly is very VERY stubborn. Hmm :) Over the last month she has learned to love food. Not all and we've had to get pretty creative with getting milk and veggies into her. She eats just about everything - veggie burgers, pancakes, cheesburgers, fries, fish, pasta, etc. It's so rewarding to not only see her eat like a "normal" kid but to know that our hard work has paid off. We never gave up no matter how many times we wanted to. We stuck with it and look at her now!!! We saw Growth & Nutrition today and we were able to get rid of her last gtube feed. I am so excited. Not because I don't want to be bothered but because it's one step closer to her getting the tube out and being more like every other kid...on the outside anyway :) We are so close yet kind of far away from removing the tube. We're not in a hurry because that tube has saved us during surgeries and illnesses when she doesn't feel like eating but we think we are safe when it comes to the eating. The thing that is holding us back is the amount of fluids she takes by mouth. She's still not drinking enough by mouth. We are still giving her 8oz of fluid through her g tube a day and she's only drinking about 4-6oz by mouth a day. We are also still giving her her meds through her tube. But I don't think that's going to be a big deal to take by mouth. Even once she starts taking everything by mouth we can't touch her tube for 6 months before it can be removed but it's OK. She has already come this far. There is no need to rush anything. All of her doctors are so impressed with her and so are we.

I have been taking Molly to the Early Intervention scensory room once a week and she loves it. They have all kinds of equipment and things for her to do. She climbs up foam hills, rocks a little boat, crawls through tunnels. It really just amazes me how far she has come because leaving the hospital the way she did I never would've believed this is where she would be today. I still get down about how rough things have been for her but anyone in our position would. Then when I see her crawling over to Jay's planter and pulling the dirt out of it for the 500th time today it makes me so happy to see her getting into things she shouldn't and not listening to me when I tell her no (I know I'm going to regret that statement some day). We are also on a waiting list for a play group through Early Intervention. I think she would benefit from it and I can be there to supervise, sanitize and disinfect :) She is doing so great with standing and walking and I think this will help her so much more. Not to mention she loves being around other kids and to be around other kids and parents that are in a similar situation to us would be good for me too. It's hard not having anyone that can relate to you.

So we don't have to go back to Endocrine for 6 months and Growth & Nutrition for 3 months but we do have cardiology next month and that includes and echo and EKG :( I'm already stressing about it and it's not until the end of September. That is one appointment I can never put out of my mind. For now I'm going to enjoy all of the progress that she has made and continues to make every day.

As always, thank you for following the most amazing person I have ever met!
Kerry

 Who needs toys?

Busy week...as always

If this post doesn't make any sense it's because Molly has been keeping me up all hours of the night. I'm like an infant. I require a good 8 hours of sleep to function properly, which hasn't happened in about 3 years.

We had early intervention on Monday. Monday is usally speech and music therapy. Her appointment was at 11:45 and they ask that you give them a 15 minute grace period. This time is very tough to begin with. It's close to lunch time and nap time. Especially if she gets up at 7am like she has been doing. Well, they didn't get here until 12:15 without a phone call or appology. I was not very happy. I'm not a big fan of the speech woman to begin with. She makes me feel like I'm not doing something right as a parent, not that she would have any experience parenting a kid like Molly. I feel like she's always judging me even though her job is not to judge me as a parent but to help Molly with communication. I didn't want to get rid of her because I think that's where Molly needs the most help. I've been going back and forth about her for awhile now because she likes to do things her way and there's more than one way to do something...especially if the way you're doing it isn't working. We had our session and they left at 1:15 after Molly had her meltdown. She was tired and hungry. It threw off her entire day because they were late. She didn't eat well because she was so tired. With ever fit she pitched that day I got more annoyed with the speech therapist. I was going to see the feeding/physical therapist on Thursday so I gave myself a few days to make a decision.

We had an appointment on Wednesday with Endocrinology in Boston. Her appointment was at 10:30 which meant we had to leave the house at 8 to allow for traffic. I had to wake Molly up at 6:30. It takes longer to get her ready than it does to get myself ready. Theere wasn't much traffic and we made it into Boston in about an hour. I was told to be there 15 minutes early in case they could take us early. I don't know when I've ever been to a doctors appointment and they've taken me early. Well, this day was no different...a half hour later than our appointment we were called in. Molly weighed in at 10.91kg and I think 81cm (around 24 lbs, 9 oz and I think like 31"). This appointment is usually quick. She repeats the same thing every time "I think her thyroid disease is because she was so sick and it's not congenital". "I would like to try to take her off of the thyroid medicine but I think we should wait until she's 3 because this is the most critical time for brain development". Of course everyone keeps a close eye on her height and weight. According to the chart her height didn't change much since we were there 4 months ago. It's so hard to get an accurate height and weight because she's always so mad when they weigh and measure her. So I'm going to start doing it at home to make sure she is growing. She's tiny but she's proportionate. She's probably the height of an 18 month old. Her shoe size is also small. She is in a 3 right now (infant) but so close to a 4. It's very hard to find cute shoes that small but I manage :) I can tell that she's getting longer from her clothes which is also difficult to buy. She can wear a size 12 months pants for her waist but 18 months for length but a 24 month for her top or a dress. See, petite! I wish I had that problem! She is due to have her thyroid levels checked anyway so we added that to our list of things to do this week. She told us she would see us back in 6 months!!!! I don't think we've been able to go 6 months in between any appointment. Very exciting!

After we came back from the appointment we learned of a fellow Heterotaxy baby that had passed away suddenly. Even though we almost never meet these families we have a special connection. It's hard not to fall in love with a baby that fights so hard and still manages to flash a smile and try to make you think that there is nothing wrong with them. It always hits so close to home and devestates us because we know that could've been us at any point. We are so lucky to have Molly with us today and there isn't a day that goes by that we aren't grateful for all of the work, prayers and love that have been put into allowing our family to be possible. If you think you're having a bad day, know that it could be so much worse.

Anytime we have a doctors appointment if effects Molly's sleeping. She wakes up crying in the middle of the night. I can't calm her down and it's almost like she's afraid back to sleep. Wednesday and Thursday night was no different. She was up from 2-4a on Wednesday and 12:30-3a on Thursday. This can go on anywhere from a few days up to a week. I hate that she is so scared that it wakes her up. Hopefully as she gets older it won't effect her this way anymore. One can hope.

Yesterday we had Early Intervention. This time it was feeding and physical therapy. I spoke to her about my concerns of the speech therapist and we decided that it's time to move on to a new therapist. I really hesitated because it takes Molly so long to get used to a new person but we still have almost a year to go so I think it's the right choice. We also discussed how much protein and calories Molly should be getting in the course of the day. She is getting the proper amount of protein but Jay and I calculated how many calories she gets and she is on the low end of the proper amount. So today she had to go for labs. On the way back we stopped at McDonalds and she had her very first happy meal. She ate just about a whole cheeseburger (without the bun) and some fries. I'm pretty sure she got her calories in lunch alone :) Last night she had fish and fries for dinner, definitely one of her favorite meals.

She continues to amaze us every day with something new. She acts more and more like a little girl everyday and we just love her to pieces.

The Results Are In...

Earlier this week Molly had her 6 month evaluation through Early Intervention. The point of the assessment is to tell us where she is now, what goals she has met and what she still needs to work on, not that I need an assessment to tell me that. In order to continue with the services we have to go through with it so we did. We did most of it on Wednesday but our sessions are only 45 mins long and that doesn't allow for enough time to do the entire evaluation. We did as much as we could and we completed the gross motor, fine motor, self care and social section on Thursday. We went over the scores and I was kind of disappointed. I don't know how accurate they are because they test her on the stupidest things. Some things she was beyond a 2 year level but other things that she didn't do or couldn't do brought her score way down. The most disappointing for me was her score in gross motor. I don't know why I thought she was going to score higher but because she doesn't walk or cruise along furniture she scored pretty low. Six months ago she was at a 7 month level and now she's at 9 months. When she starts walking that will go way up but for now that's what it is. She is almost 27 months old and scored at a 9 month level...heartbreaking! I'm not going to dwell on it because I know she is doing so well but I did have a pity party yesterday. Next was fine motor. She was at an 8 month level 6 months ago and now she's at an 11 month level. The reason she's only at 11 months is because she doesn't pick things up with her pointer finger and thumb. She picks it up with her whole hand. She also didn't color on the paper which really brings the score down. UGH! On to self care. There are 3 sections for this group. For feeding she was at 8 months and now she's at 11 months which I was pretty surprised but she explained that it's because she doesn't feed herself with a fork or spoon. Toileting was 11 months and now she's 15 months and hygeine was 14 months now she's 15 months. For selfcare over all her score was 14 months. Last was social. She offered toys to me, she adjusts well to new surroundings, she engages in conversation, etc. She was at 10 months and now she's at 16 months. I don't know the results of communication or cognative. I don't want to know the results of communication and we are guessing for cognative she'll be at a 12 month level. I told the woman that as long as she continues to make forward progress that's all I care about and it's true but those scores really bothered me yesterday but I'm over it today. She is still the most amazing little girl I know and will do amazing things in life.

I had mentioned that we are helping a very wonderful nurse and good friend, Kristin, raise money for the New York Marathon. She is running the 26.2 mile marathon in honor of Molly and all of her other patients at Children's Hospital Boston. We have partnered up with her through Miles for Miracles. We are so proud of her and so honored that she would include us in such an amazing event. After all, we owe her so much for all that she has done for us and for Molly. One of our good friends, sells Pampered Chef and has offered to throw an online Pampered Chef Fundraising Party. The party runs now through August 8th. 10% of the sales will go the Miles for Miracles fundraiser. If you are interested in getting some great new gadgets for your kitchen or for a gift for someone else (Christmas is only 4 months away) as well as giving back to our favorite cause, please click on the link and as always we appreciate your support!!
Pampered Chef Fundraiser for Miles for Miracles

Assessment

Jay and I were talking the other night...about the only thing we really know how to converse about and that is Molly of course. We were talking about her developmental delays. She has made great progress over the last year and we are happy with where she is and as much as we hate to compare her to other kids I think it's only human that we do from time to time. I'm not saying that we compare her to another heart healthy 2 year old because we are smarter than that but we follow the progress of a lot of cardiac kids and while we only know of a few that have spent the amount of time in the hospital that Molly has and are home doing well, we can't help but feel that we don't know any that are as far behind as she is. We are not concerned that she's far behind because she is making forward progress...she eats everything..fish, chicken, yogurt, ice cream, pancakes, etc. She drinks, not a ton and definitely not as much as we need her to before that g tube can come out but just 5 months ago she wasn't drinking at all so we are happy with that. She crawls, pretty fast now. She will take steps while holding on to my fingers. She can go from sit to stand and pull herself to her knees. She has pulled herself to standing twice and hasn't done it again since. She says "mama, dada, ga (for go)". I believe she is the furthest behind in communication. I'm not talking about saying words, I mean about communicating what she wants and doesn't want, what she needs, etc. According to early intervention that is usually the last piece to fall into place.

She had her 6 month evaluation yesterday, well, part of it. We should be finishing up one part today and one part on Monday. I don't even want to hear the results of the communication. I think she's make great progress with fine motor and gross motor. Yesterday she was asked to put a puzzle together and she did it. I was shocked and proud of course. It was only 3 pieces but she did it. They also asked her to a few other things. Some she did and others she wasn't interested in. They wanted her to take a crayon and mark a piece of paper. She took the crayon, flung it across the room and started laughing. I'm not sure if that counts for anything :) They asked how she gets my attention if she wants me and I said she fusses. That isn't good enough for them. What the heck does a kid do that doesn't talk or walk? I have so much frustration for Early Intervention. I feel like it has been a big waste of the last year and a half. I wish I knew about outpatient rehab long ago because I would've pursued that before now. Early Intervention only goes up to 3 and every time we have a session I think to myself that I can't wait until she's 3. I know it doesn't matter where she is as far as age goes developmentally but it's still makes me a little sad that she has to work so much harder than a heart healthy kid to reach her milestones.

Early intervention will be here in a minute. Wish me luck!