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!

Vacation!

Two years ago I never would've dared to think about planning a vacation with Molly. I guess part of me didn't think it was ever going to happen because never did I think she would be well enough or I would trust that we would be able to take care of her that far away from a hospital. Who am I kidding? From Children's. Even a year ago we still weren't in a place to make any long term plans or think about a vacation. But now she is a whole different kid and I say kid because she's not a baby anymore. She is growing up and I love it! Part of me is sad that I missed out on a lot of her being a baby but I'm thrilled that she is with us, doing fantastic and being a little girl.

Our friend's family was generous enough to allow us to stay at their condo for 3 days. We left here Tuesday morning and headed up to NH. The condo was right down the street from Weirs Beach. We didn't do a whole lot the first day. Just unloaded the car and got settled in. Jay's family also has a house not to far from there so he was familiar with the area. We had plans to go to Santa's Village the next day so we tried to get to bed fairly early because it was a two hour ride from where we were staying. Well, that night was a nightmare. We weren't even sure we were going to get to Santa's Village the following day. We put Molly to bed and just as I was getting ready to go to bed she woke up. She was crying and wouldn't calm down. SO I took out the ipad, put on her favorite movie and she calmed right down. Except that backfired because all she wanted to do was watch the ipad and wouldn't go to sleep. I tried to put her in the pack n play with the ipad but then she would hit something and the thing would shut off so I'd have to put it back on. So frustrating. This went on until 2am. I was finally able to go to sleep and she woke up at 5:45 for the day. I couldn't believe it. I wanted to throw up I was so tired. We heard it was going to rain on Thursday so we made the decision to suck it up, get dressed and head up to Santa's Village. Molly was in a great mood and we figured she would nap on the way up. We were in the car for about 3 minutes and she was out! We had to wake her when we got there. Our first stop was the carousel. I figured she would like it because she's been on the rides at the mall and loved it well, I was wrong...very very wrong. She started out with one hand on the reindeer and one hand holding on to my shirt. then she decided that she was going to put both hands on my shirt, clenching for dear life, and faced backwards for the entire ride. I had to sing "The Wheels On The Bus" for the entire ride so she wouldn't burst into tears. All the while I'm thinking to myself "please hurry up and stop the ride". After that was over we fed her lunch and just walked around the park to see if maybe there was something else she could try now that she was more awake, full belly and ready to go. I guess the thing we didn't think about was the signs that say "nobody with a heart problem can ride this ride". I thought about when she's older but not at 2. She still had a great time watching all of the kids, being outside and taking in the new surroundings. We will definitely take her back when she's a little older and can walk (she's VERY heavy). I'm so happy that we went and were able to make these memories. We wanted to make absolute sure she was tired for the night so we took her for a walk down the beach. We went into all of the little shops, went to the arcade. I tried to take a picture with her in the photo booth but she was more interested in looking at herself in the mirror on the side of the booth so that was a flop. We put her down for the night and she went right to sleep and slept all night...WOO HOO!!

We didn't have a whole lot planned for Thursday because it was supposed to rain so Jay's cousin gave us a bunch of tokens for an arcade that we had planned to go to while we were there so that's what we did. We tried to put Molly on a few of the coin-operated rides and she was not having it. We found one that she would tolerate so I guess it wouldn't matter if we did find a ride for her to go on at Santa's Village because she probably would've had a meltdown anyway. Once we were done we headed back, fed her lunch, put her down for a nap and once she woke up headed out to do some more shopping. We started packing everything up so we could head out early this morning.

We were home by 10am, unpacked by 11 and Molly was down for a nap by 11:30. Since we both felt like we were going to fall on our face if we didn't do something we went out. We ended up going out to dinner at a Mexican restaurant up the street. Molly ended up eating a cheese quesadilla and some of whatever it was that Jay had. There are very few things that she won't at least try. Some things she'll take multiple bites of and other things she'll eat one bite and won't take another but at least she tries it. I'm so excited to get back to Growth & Nutrition so they can see all that she does now!

We had a great vacation. We didn't do a whole lot but we were away with just the three of us. Playing on the floor, laughing at Molly because she's that hilarious, making memories that I will cherish forever. It was the perfect vacation and I wouldn't have done anything different!

Always Something

The majority of our days are spent trying to prevent Molly from getting sick...disinfecting counter tops, sanitizing and washing our hands, wiping down shopping carts, tables, chairs, playground equipment, etc. We have hand sanitizer in every room of the house, both cars, diaper bag, purse, strollers and strollers. When we show Molly the Purell bottle she rubs her hands together. Where is that on the list of milestones because it's at the top of my list :) But no matter how hard we try sometimes it's just not enough. On Saturday we noticed that her poop was more wet but we just figured that she was eating a lot more things now and probably didn't agree with her. Sunday she was really crabby and just miserable. Monday she had a runny nose, cough and her sleeping wasn't great. Tuesday she seemed a little better but she woke up crying and sweating but she never had a fever, her O2 was normal (98-99) and her heartrate was normal. We assumed she just had a cold. We had been giving her Tylenol since Sunday just to keep her comfortable. Yesterday morning she woke up with a rash on her face. It was only on her face so I assumed it was because she sleeps with her blankie on her face and was hot. I emailed a picture to a few of our very wonderful nurse friends to see if they thought it was a heat rash because that's what we were thinking and they said that it could be. So we didn't put anything on it because that is always our first instinct. I looked up heat rashes for babies and it said to keep it dry, don't put anything on it and try to keep the baby cool by turning the AC on and putting a fan on them when they sleep which is what we do anyway. When she woke up today it had spread to her chest, stomach, back and diaper area so I took her to the pediatrician. She looked at her throat and it was red and where she's had a runny nose, a lot of muscous and a cough the rash is a result of a virus. It should run it's course in a few days. She told me to give her Benadryl which makes me nervous because when she was in the CICU they never liked to give it to her so I emailed our good friend in the CICU to find out why and it's OK to give it to her now. I gave her a dose and she took it in her mouth like a big girl! Oh and she weighed in at 24.6 lbs!!! That's up one pound from the last time she was seen at Growth & Nutrition.

We were also approached by one of the nurses that used to take care of Molly when she was in the hospital. Actually she's more than a nurse to us. She is a great friend and will always be a part of our lives. She took care of Molly from the day she came in until the day she left. I don't know how we didn't scare her away! She is running the New York City Marathon in November and asked us to be a patient partner in the Miles for Miracles. We are so honored that she picked Molly to take on this journey with her. She will be running 26.2 miles in honor of all of her patients and more specifically Molly. She is required to raise a minimum of $3,000 and we have agreed to help her out with this. All of the money raised goes back to Children's Hospital Boston and well, everyone knows how we feel about Children's Hospital. We are trying to think of fundraisers or any way to help her raise these funds. We will be cheering her on and are so proud of her. We love you, Kristin!!! You can follow her progress at www.runningfromtheheart2012.blogspot.com or read about the Miles for Miracles at http://howtohelp.childrenshospital.org/newyork/page/Kristin-Barber.htm#.UAT4ggWjEMk.facebook

As always, thank you for checking in our miracle!

Love, Kerry

My hero!

I am not a person that is easily impressed. I don't get excited easily. I don't jump up and down when I am excited. I don't know when that changed because when I was little I would get so excited on Christmas Eve that I would go to bed at 5pm and lay in bed all night waiting for 4am when we would go wake our parents up so we could open gifts. Since Molly has come into our lives I'm starting to feel that level of excitement again. Well, maybe not the first year. I think I was too scared to get excited about anything because we were always waiting for the bad to follow the good. Each day since Molly has come home she has gotten healthier and stronger. We don't see it from day to day but we can see it looking back. I don't even have to look back very far. Recently each day brings new things. New foods, new developmental milestones. We could not be prouder.

Molly recently started crawling. When early intervention started coming about a year and a half ago the woman that was coming at the time told us that Molly was probably going to need a wheelchair. I don't know what she was basing that on but I was devastated that she even thought that. I don't know if it was because she was 1 and wasn't walking or what her reason was. To make a long story short, she no longer comes to our house. I wish I could find that woman now and show her all that Molly does. She acts like a normal little girl. Does she act like she's 2? No, more like a year but every day she does something that gets her one step closer to where she should be. She crawls all around. She gets up on her knees and is co close to pulling herself to standing. We have been working on standing a lot more with early intervention. They suggested to me back in May that she may need braces for her ankles. They no longer think that. I wish when I said "she just needs time" that people will start listening to me. She stands for pretty long periods of time and plays while standing up. She gets into things that she's not supposed to. She is just like a kid that has never been through any medical procedure.

Our biggest challenge so far...feeding. Of course this would make sense because she never learned to drink from a bottle. She was never fed any type of baby food. When we were in the hospital we only cared about getting her the proper nutrition and we didn't care how she got it as long as it was making her healthy. Now we are focusing on the "how she's getting it". She has been eating the same thing for awhile now...baby food, yogurt, baby food yogurt. I keep asking the Nutritionist and early intervention what the next step is and how do we get there. They don't have the answers so I'm just doing it myself. We offer her everything we have and for the most part she will try anything. Usually it's a few licks and that's it. Well, this week I offered her mac and cheese and she loved it!!! I almost couldn't believe that she ate the whole thing after eating a yogurt. That was fantastic and I was so excited but it's not good enough. Why stop there? The next day I tried chicken nuggets dipped in bbq sauce and she ate every one of those too. Today she had lobster, more mac & cheese and a whole piece of birthday cake! We are so amazed by all that she has done just in this week alone. After this week I AM EXCITED! All of our hard work is finally paying off. I hope she continues with her eating. I'm hoping at our next growth & nutrition appointment in August that they will stop her g tube feeds all together. Our biggest hurdle before getting her gtube removed is getting her to drink enough fluids. If she can't drink enough she won't poop and if she doesn't poop that means we don't get any sleep because a constipated Molly is a very unhappy Molly. So we're not rushing it but we are enjoying all of this new found normal kiddo stuff. To sit back and watch her play and babble makes us so happy and we are enjoying every second of her! She truly is our hero!