Molly started at the outpatient rehab facility and we both love it! She is going to benefit greatly from going to this place. I really like the PT & Speech therapist. They aren't afraid to push her and that's what she needs. She had speech for the first time on Thursday. She took her into a room and I couldn't go back with her. I know it's because she would cooperate better if I wasn't there but it was still a little sad. It's the longest she has been out of our care (other than OR trips) since she's been home. I don't know how I'm going to send her off to preschool. It was the longest 45 minutes but she did great. She is working on using more signs which she is doing at home. She has a great app for the iPad and she will sit and look through the signs and do them on her own. Then she'll start using them and I'll have no idea that she knew them or what she was saying. Just this week she has been trying to imitate what we say which she hasn't been doing and it gives us so much hope..not that we ever lost it but some times we can't help but feel that it will never happen.
She does really well in PT. The PT is great. We see her twice a week. I'm allowed to go back with her for PT (thank goodness or I may have had an emotional breakdown at the facility that day :) ) but next week I don't think I will. When she doesn't want to do what is being asked of her she fusses and wants me to pick her up. So if I'm out of the equation she is more likely to cooperate.The PT does think that she will benefit from ankle braces but doesn't think she is far off from walking. We are going to discuss pool therapy next week. Her left leg is definitely weaker so we are supposed to encourage her to use her left leg when standing, kneeling, climbing the stairs, etc. and hopefully that will help to strengthen it. I can't wait to take her back next week!
Today was her 3 year wellness visit. She weighed in at 28 lbs, 6 oz and is 36" long. She is the 25th percentile for weight and 10-15th percentile for height. We discussed her developmental milestones, her feeding issues, having the g tube removed, etc. I told her that I wanted to see the orthopedic doctor so she is going to send over a referral. Hopefully we won't have to wait long for an appointment. She is also going to see an opthamologist since her eyes have never been checked. I have come to the conclusion that we are never going to be done to just cardiology! The pediatrician was pleased with her progress and growth. We discussed our wish trip to FL and she was telling me to make sure that we put a blanket on the seat for germs. Apparently she doesn't know who she is talking to. I explained to her that when we took Molly to an amusement park last year we disinfected the rides before she got on and we still put the seat cover on the shopping cart before we put her in. She agreed that we are doing everything right and the things we are doing are what is keeping her so healthy and fever free (knock on wood).
We are on week number 3 of sleeping through the night...WOO HOO! It's almost too good to be true. I forgot how great it feels to be well rested.
That's all for now.
This is the story of a brave little lady that started her life in a unique way. Her courageous start has paved the way for her to touch the lives of wonderful and supportive people and do amazing things with her life!
Friday, May 31, 2013
Thursday, May 23, 2013
Hopeful once again!
It's never easy hearing all of the negative in any situation. After being told something over and over again or hearing yourself say the same thing over and over again you start to believe it or it starts to effect you. I know that Early Intervention is a great service and I'm not saying that we didn't get anything out of it but I feel like it wasn't enough for Molly. She needed and still needs more than what they had to offer.
So today we met with the outpatient rehab therapists and I feel so much better than I did the other day after our last assessment with the school system. This rehab facility sees all types of kids and I really believe this is where she needs to be. I think she is going to benefit greatly from their services. They understood what I said when I spoke. They asked my goals for her and what I wanted to come out of her therapy. They have all kinds of equipment for her to use. They are very nice and kid friendly and I was so happy walking out of there today. For the first time ever a therapist said that Molly was smart. Just because she doesn't speak doesn't mean she can't be intelligent. I know that Molly is a miracle and she has been through so much in her short life and she will catch up but sometimes it's easy for me to get caught up in the fact that she is 3 years old and doesn't walk and talk. I can't take her to a playground and tell her to go play. But after taking her to this place today they gave me hope that one day she will be able to do all of those things. It's hard when I go on Facebook and see kids that were born after Molly doing all of the things she should be doing, therefore I've taken a step back because sometimes it just gets to be too much.
So what we got out of today: we met with the speech therapist first and she was great. She took down her medical history (the very brief version) and we talked about what Molly does (not what she doesn't do) and she worked with her a little bit. She said that Molly communicates just fine with her facial expressions which is something EI used to say all the time. She has a way of looking at you as if she's saying "are you stupid?" and giving you a complex. The lady thought she was hilarious and said they were going to have fun and I hope that's the case. We are going to start with just one day a week with speech and if she does well we will bump it up. Then we met with the physical therapist and she was also very nice. She checked all of her muscles, took a look at her walking, put her in a walker that she wanted no part of and observed her standing and bending over. She has low muscle tone but not too bad and not concerning. She also thinks that she will benefit from braces on her legs/ankles and she thinks that Molly isn't walking independently yet because she lacks confidence and nothing more and after thinking about it it makes so much sense. She thinks she's very close and because she is close we are going to see her twice a week. She did not say they were going to have fun but said Molly was going to give her a run for her money. I think there's a CICU full of nurses in Boston that have also said that once or twice. We are also going to enroll her in pool therapy. It will be great for muscle strengthening and she will love it.
So overall, I'm so happy to start this next phase of therapy. I thought our summer was going to be quiet but we have already filled up our days and I'm very OK with it as long as Molly benefits from it and makes the progress that she needs to. Plus she was so good and she loved it too!
Here's to hoping for a successful next step...
So today we met with the outpatient rehab therapists and I feel so much better than I did the other day after our last assessment with the school system. This rehab facility sees all types of kids and I really believe this is where she needs to be. I think she is going to benefit greatly from their services. They understood what I said when I spoke. They asked my goals for her and what I wanted to come out of her therapy. They have all kinds of equipment for her to use. They are very nice and kid friendly and I was so happy walking out of there today. For the first time ever a therapist said that Molly was smart. Just because she doesn't speak doesn't mean she can't be intelligent. I know that Molly is a miracle and she has been through so much in her short life and she will catch up but sometimes it's easy for me to get caught up in the fact that she is 3 years old and doesn't walk and talk. I can't take her to a playground and tell her to go play. But after taking her to this place today they gave me hope that one day she will be able to do all of those things. It's hard when I go on Facebook and see kids that were born after Molly doing all of the things she should be doing, therefore I've taken a step back because sometimes it just gets to be too much.
So what we got out of today: we met with the speech therapist first and she was great. She took down her medical history (the very brief version) and we talked about what Molly does (not what she doesn't do) and she worked with her a little bit. She said that Molly communicates just fine with her facial expressions which is something EI used to say all the time. She has a way of looking at you as if she's saying "are you stupid?" and giving you a complex. The lady thought she was hilarious and said they were going to have fun and I hope that's the case. We are going to start with just one day a week with speech and if she does well we will bump it up. Then we met with the physical therapist and she was also very nice. She checked all of her muscles, took a look at her walking, put her in a walker that she wanted no part of and observed her standing and bending over. She has low muscle tone but not too bad and not concerning. She also thinks that she will benefit from braces on her legs/ankles and she thinks that Molly isn't walking independently yet because she lacks confidence and nothing more and after thinking about it it makes so much sense. She thinks she's very close and because she is close we are going to see her twice a week. She did not say they were going to have fun but said Molly was going to give her a run for her money. I think there's a CICU full of nurses in Boston that have also said that once or twice. We are also going to enroll her in pool therapy. It will be great for muscle strengthening and she will love it.
So overall, I'm so happy to start this next phase of therapy. I thought our summer was going to be quiet but we have already filled up our days and I'm very OK with it as long as Molly benefits from it and makes the progress that she needs to. Plus she was so good and she loved it too!
Here's to hoping for a successful next step...
Tuesday, May 21, 2013
Assessments and More
We had a nice little break after Early Intervention ended but all good things must come to an end. We have been very busy with preschool assessments and I'm happy that they are over. We met with PT & OT first and I really liked the PT. She made me feel good about where Molly is and the progress she has made. She gave me hope with her walking and made me feel good about where she is developmentally. She had her speech evaluation last week. I wasn't loving this woman. I was explaining my concerns about germs and she said that they take every precaution (probably not to our standards but I'll give them some credit) but nothing is guaranteed. I'm not an idiot. I wasn't suggesting that she will never get sick. I was just telling her that I'm nervous to start her in preschool because I know that she WILL get sick. I also told her I was excited for her to start with new therapists whether they are at the school our the outpatient therapy clinic because I'd like to hear some new ideas and get her on the right track for communication because this is the area we struggle and again she told me that there are no guarantees with what they are going to do. She told me that there are 3 speech therapist so I guess I need to hope she doesn't work with Molly often. Maybe it was just a wrong first impression or maybe I was just being sensitive. We will see.
Today we met for the academic assessment. My first sentence was "she doesn't speak". So she's going through and asking me all of her stupid questions...does she sit on the potty ~ no. Does she dress herself? ~ no. Does she feed herself? ~ no. Does she act different when someone is hurt? ~ no. Can she sing the alphabet? ~ yes, she can't speak but she can sing the alphabet. Can she count items in a line? ~ again....yes, she can't speak but she can count. I was getting more annoyed as the questions kept coming. It's so frustrating to sit there and have to tell them all of the things that she can't do. All of the things a typical three year old does but she doesn't do. But I typical three year old hasn't been placed on bypass twice, lived in a hospital for 8 consecutive months plus additional hospital stays, had a trach, plus everything else that she has been through. I don't know if I'm ready for her to start preschool. She's already so different from every other kid and I don't usually let it bother me until we go through stretches like this when I have to keep telling everyone over and over again how she can't speak, can't walk, etc. UGH! I just can't wait for this part to be behind us so we can enjoy the summer. I hate this for her. I hate that she is behind. After all that she's been through it's not fair that she continues to struggle. I know that she doesn't care and she's happy as long as she has her TV, ipad and Oreos but it kills me sometimes.
We have another assessment on Thursday and that's for the outpatient rehab. Unless they suggest more therapies she will see speech and PT once a week.
She has been taking a few steps on her own. Nothing consistent and she only does it when we feels like it but she is finally doing it. She stands all by herself now too and she does that really well. She's steady on her feet. We have an appointment for her 3 year check up next week and I'm going to have the pediatrician write a referral to see her orthopedic doctor and most likely get fitted for braces. She definitely needs the support at least in her left leg if not both. So hopefully we'll get in to see him sooner rather than later.
I made her appointment for the cardiologist. Her next appointment is going to be September 10. I wanted her to be seen before we go to FL just to make sure she's in tip top shape. So I will stress from now until September 9th.
I almost forgot! This is the most important thing! For the past year and a half or so we have struggled with sleep. Which I know isn't a secret because I've complained about it enough. We have tried everything. We have changed her medications around, did the whole Melatonin thing. You name it, we tried it. Well, on Molly's 3rd birthday we stopped her Levothyroxine which is her thyroid medication. A few days after we stopped it, what do you know! She slept through the night. One night...two nights...one week and now we are on two weeks. Once in awhile she'll wake up for a minute but I just rock her and she goes right back to sleep. We haven't had a middle of the night, screaming wake up, up for 3 hours since we stopped the thyroid medication. We don't know if this is the answer and we suspected this could have something to do with it because one of the side effects is sleep problems. We thought of this awhile ago and switched her dose from night to morning but that didn't do the trick. So hopefully this was the answer. I feel like a whole new person. I will never ever take sleep for granted. Since she has been sleeping so well she has been in a great mood every day and doesn't fight me to eat or take her meds. It has been great. I hope it stays this way. Life is definitely more pleasant when the females in the house are well rested! I hope that Molly isn't going to make me eat my words. I didn't even want to say anything but I figured enough time has passed.
There is a little over 2 weeks left before the NStar Walk so if you are interested in donating please click the link below. I can't thank everyone enough for donating to the walk and always supporting us. And of course thank you so much to everyone who is walking with us. We couldn't have done this without you. You mean everything to us!
NStar Walk Donation Page
As always, thank you for checking on my favorite person! Have a wonderful but safe Memorial Day weekend!
Today we met for the academic assessment. My first sentence was "she doesn't speak". So she's going through and asking me all of her stupid questions...does she sit on the potty ~ no. Does she dress herself? ~ no. Does she feed herself? ~ no. Does she act different when someone is hurt? ~ no. Can she sing the alphabet? ~ yes, she can't speak but she can sing the alphabet. Can she count items in a line? ~ again....yes, she can't speak but she can count. I was getting more annoyed as the questions kept coming. It's so frustrating to sit there and have to tell them all of the things that she can't do. All of the things a typical three year old does but she doesn't do. But I typical three year old hasn't been placed on bypass twice, lived in a hospital for 8 consecutive months plus additional hospital stays, had a trach, plus everything else that she has been through. I don't know if I'm ready for her to start preschool. She's already so different from every other kid and I don't usually let it bother me until we go through stretches like this when I have to keep telling everyone over and over again how she can't speak, can't walk, etc. UGH! I just can't wait for this part to be behind us so we can enjoy the summer. I hate this for her. I hate that she is behind. After all that she's been through it's not fair that she continues to struggle. I know that she doesn't care and she's happy as long as she has her TV, ipad and Oreos but it kills me sometimes.
We have another assessment on Thursday and that's for the outpatient rehab. Unless they suggest more therapies she will see speech and PT once a week.
She has been taking a few steps on her own. Nothing consistent and she only does it when we feels like it but she is finally doing it. She stands all by herself now too and she does that really well. She's steady on her feet. We have an appointment for her 3 year check up next week and I'm going to have the pediatrician write a referral to see her orthopedic doctor and most likely get fitted for braces. She definitely needs the support at least in her left leg if not both. So hopefully we'll get in to see him sooner rather than later.
I made her appointment for the cardiologist. Her next appointment is going to be September 10. I wanted her to be seen before we go to FL just to make sure she's in tip top shape. So I will stress from now until September 9th.
I almost forgot! This is the most important thing! For the past year and a half or so we have struggled with sleep. Which I know isn't a secret because I've complained about it enough. We have tried everything. We have changed her medications around, did the whole Melatonin thing. You name it, we tried it. Well, on Molly's 3rd birthday we stopped her Levothyroxine which is her thyroid medication. A few days after we stopped it, what do you know! She slept through the night. One night...two nights...one week and now we are on two weeks. Once in awhile she'll wake up for a minute but I just rock her and she goes right back to sleep. We haven't had a middle of the night, screaming wake up, up for 3 hours since we stopped the thyroid medication. We don't know if this is the answer and we suspected this could have something to do with it because one of the side effects is sleep problems. We thought of this awhile ago and switched her dose from night to morning but that didn't do the trick. So hopefully this was the answer. I feel like a whole new person. I will never ever take sleep for granted. Since she has been sleeping so well she has been in a great mood every day and doesn't fight me to eat or take her meds. It has been great. I hope it stays this way. Life is definitely more pleasant when the females in the house are well rested! I hope that Molly isn't going to make me eat my words. I didn't even want to say anything but I figured enough time has passed.
There is a little over 2 weeks left before the NStar Walk so if you are interested in donating please click the link below. I can't thank everyone enough for donating to the walk and always supporting us. And of course thank you so much to everyone who is walking with us. We couldn't have done this without you. You mean everything to us!
NStar Walk Donation Page
Thursday, May 9, 2013
Molly turns 3!
This past Saturday was Molly's third birthday and we celebrated on Sunday with friends and family. Molly was not in the mood to deal with so many people coming to her house. Jay held her just about the entire time until people started to leave. Then she was happy. The best thing that came out of her crying all day was that she slept all night!
Life has been great since we ended Early Intervention. It's been nice not to have to plan our day around someone else. We don't have to rush out of the house or deal with her meltdown because they are coming to our house. We do start outpatient therapy on the 23rd. For now, she will see speech and physical therapy for 45 mins each once a week. After the evaluation they will determine if she needs to be seen more often or if we need to add any other therapies.
Yesterday Molly decided she was going to start standing herself up all by herself. She stands for a pretty good amount of time without holding on to anything and without falling. Of course there has to be a lot of cheering to keep her there! I am so proud of her!!!!! We just have to get her walking by Disney because she is HEAVY!!!!!!!!!!!
One month from today we will be participating in the NStar Walk for Children's Hospital! I am so grateful to them for all that they have done and continue to do for Molly. Three years ago I didn't even know who they were and what they were capable of doing and now I know that they perform miracles and give moms and dads the chance to raise a baby that may not have had a chance anywhere else. I know that most people in our life may never benefit from the wonderful care that Children's has to offer and that is a great thing but we do and we are not sad that we do. We are happy to have them so close. They are like family to us. Children's feels like home. We love everyone in the Cardiac ICU and couldn't be happier to have known them. We are not done with Children's and never will be. Molly is a life long patient. So please, if you can spare a few dollars, help us to give back and thank Children's for giving us 3 emotional, challenging, wonderful years with the greatest miracle to go through those doors!
NStar Walk for Boston Children's Hospital
I also created a slideshow of Molly's first 3 years of life. I was going to post it for her birthday but with the passing of our buddy, Ryker it just didn't seem right. So I'm sharing it now. It's a little long but I hope you enjoy!
Life has been great since we ended Early Intervention. It's been nice not to have to plan our day around someone else. We don't have to rush out of the house or deal with her meltdown because they are coming to our house. We do start outpatient therapy on the 23rd. For now, she will see speech and physical therapy for 45 mins each once a week. After the evaluation they will determine if she needs to be seen more often or if we need to add any other therapies.
Yesterday Molly decided she was going to start standing herself up all by herself. She stands for a pretty good amount of time without holding on to anything and without falling. Of course there has to be a lot of cheering to keep her there! I am so proud of her!!!!! We just have to get her walking by Disney because she is HEAVY!!!!!!!!!!!
One month from today we will be participating in the NStar Walk for Children's Hospital! I am so grateful to them for all that they have done and continue to do for Molly. Three years ago I didn't even know who they were and what they were capable of doing and now I know that they perform miracles and give moms and dads the chance to raise a baby that may not have had a chance anywhere else. I know that most people in our life may never benefit from the wonderful care that Children's has to offer and that is a great thing but we do and we are not sad that we do. We are happy to have them so close. They are like family to us. Children's feels like home. We love everyone in the Cardiac ICU and couldn't be happier to have known them. We are not done with Children's and never will be. Molly is a life long patient. So please, if you can spare a few dollars, help us to give back and thank Children's for giving us 3 emotional, challenging, wonderful years with the greatest miracle to go through those doors!
NStar Walk for Boston Children's Hospital
I also created a slideshow of Molly's first 3 years of life. I was going to post it for her birthday but with the passing of our buddy, Ryker it just didn't seem right. So I'm sharing it now. It's a little long but I hope you enjoy!
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