Tomorrow morning we are going to leave on a jet plane ...(everybody sing along: Leeeavin on a jet plane...don't know when I 'll be back again)...Actually we do know when we are going to be back. We are going to the good old Evergreen state of Washington from the 11th of July to the 26th. We are flyin home to visit with all of Adam's family (all under the same roof for the first time since our wedding!) and to help out his parents by laying flooring and painting their house for them.
We are going to take some time out to see my family as well and I hope that you will look forward to seeing all of our awesome pictures from our visit...expect to see them in August! Small updates soon to follow.. :)
Friday, July 10, 2009
Tuesday, July 7, 2009
Decisions and plans...
So after yesterday's crazy news, and emotional out pouring from me, Adam and I have decided a few things. The first of which is that we will be putting the girls into Gymboree classes. Yes,
I know that is one more thing we will have to go to and do, but it is something that WE will be doing as parents to interact with our girls. This is to strengthen our bond with them, and for them to have one hour of our devoted attention a week.
Bree's Gymboree class will be on Fridays at 12. That will be the only thing we will have planned for that day. Friday's will be Bree Day! We will do things that she enjoys, and will, as a family, concentrate on her. This may sound odd to you all, but even though Bree receives a lot of attention right now anyways, it is not for the benefit of fun. It is purely for developmental advancement and trust me, it is not always fun. You should her when she has her developmental therapy...she screams for a good twenty minutes of the forty five minutes of therapy she gets. So, Friday being Bree Day will be a good thing. :)
Saturdays will be Riley Day! Her Gymboree class is at 11 every Saturday. Same arrangement as Bree...we will be doing fun things that Riley likes to do throughout the day. Coloring, singing songs, building with blocks, going to the park, etc etc. Whatever she wants to do (within reason) we will do! She is growing so fast and so much that we do not want to miss a thing. :)
For their Gymboree classes, Adam and I will be switching off. For example, I will go with Bree on Friday and he with Riley on Saturday. The next week he will go with Bree and I will go with Riley. This is so that the girls will learn to play and interact with either parent present. I also think (and I sure many of you will agree!) that sometimes Daddy's are better at letting kids explore and do things that Mommy might not allow because they may seem a bit dangerous to Mommy. I know I struggle with that sometimes. :)
So, we will be limiting our therapies and appointments to Monday through Thursday. I think that this is a choice that may be frustrating to some doctors, but we as a family need the downtime. More specifically, my girls need the down time. Even though Bree has medical issues, that is not all of what our life is about. Life is about loving and appreciating those whom you have around you. Family comes first...no matter what.
I know that is one more thing we will have to go to and do, but it is something that WE will be doing as parents to interact with our girls. This is to strengthen our bond with them, and for them to have one hour of our devoted attention a week.
Bree's Gymboree class will be on Fridays at 12. That will be the only thing we will have planned for that day. Friday's will be Bree Day! We will do things that she enjoys, and will, as a family, concentrate on her. This may sound odd to you all, but even though Bree receives a lot of attention right now anyways, it is not for the benefit of fun. It is purely for developmental advancement and trust me, it is not always fun. You should her when she has her developmental therapy...she screams for a good twenty minutes of the forty five minutes of therapy she gets. So, Friday being Bree Day will be a good thing. :)
Saturdays will be Riley Day! Her Gymboree class is at 11 every Saturday. Same arrangement as Bree...we will be doing fun things that Riley likes to do throughout the day. Coloring, singing songs, building with blocks, going to the park, etc etc. Whatever she wants to do (within reason) we will do! She is growing so fast and so much that we do not want to miss a thing. :)
For their Gymboree classes, Adam and I will be switching off. For example, I will go with Bree on Friday and he with Riley on Saturday. The next week he will go with Bree and I will go with Riley. This is so that the girls will learn to play and interact with either parent present. I also think (and I sure many of you will agree!) that sometimes Daddy's are better at letting kids explore and do things that Mommy might not allow because they may seem a bit dangerous to Mommy. I know I struggle with that sometimes. :)
So, we will be limiting our therapies and appointments to Monday through Thursday. I think that this is a choice that may be frustrating to some doctors, but we as a family need the downtime. More specifically, my girls need the down time. Even though Bree has medical issues, that is not all of what our life is about. Life is about loving and appreciating those whom you have around you. Family comes first...no matter what.
Monday, July 6, 2009
It wasn't suppose to be this way....
...but it is what it is. As a parent of a micro preemie I am learning that you can only take so much when it comes to doctors and therapists telling you that your kid is behind, has delays, this and that...before it starts getting to you. I know that they all mean well, and they do intend to help her, but it is quite overwhelming.
Here's the rundown: We went to go be evaluated on her development today. We see AJ Pratt who is with Phoenix Children's. Now this lady knows her stuff! She is very educated and has great connections at PCH so she is going to get Bree the help that she needs.
The help that Bree needs has greatly expanded. Within the hour of our evaluation we rounded ourselves up four referrals for other specialists. First the referrals:
1. Intensive Feeding Therapy - That was not a big surprise to us. She refuses bottles no matter what we do. Every so often she'll comply and do great, but usually it's refusal.
2.Neurologist - We get to go back and see Dr. Teodori for some concerns with her muscle movement. She is very 'jittery' with her movements and while that was okay at 3 months adjusted age, she should have well outgrown it by now. I am sure we will be referred to have an MRI done.
3. Nuerosurgery - Yup, nuerosurgery...Bree's skull plates are not growing together correctly and she has problems with the 'sutures' (where two skull plates meet) that are in her forehead area. She has a ridge that runs down the front of her forehead. This could potentially limit her brain growth so we need to have it looked at and followed. I am sure we'll need an MRI for this as well. (maybe they could just do one and use it for both purposes?)
4. Physical Therapy - I will elaborate more in the next portion of the blog, but again, not a surprise...just another thing to try and squeeze into our schedule.
Now onto the evaluation portion. I showed AJ some pictures on my phone of Bree doing tummy time, and explained how she will not push up on her arms. After some evaluation and play, she explained that Bree has very loose shoulders. She does not have good muscle strength in that area and that is holding her back from doing many things she should be. Because of her poor shoulder muscle strength, she is unable to push herself up when on her tummy, she is unable to play with toys in a certain way when sitting up (it's hard to explain but makes sense), and so on and so on.
In order to understand her 'placement' on the developmental chart one must know her adjusted age. This is counted from her due date (December 19) to today's date. So, as of today, Bree is 28 weeks and 3 days old. Here's how she rates in the following categories:
1. Language: 32 WEEKS!!!! (that's my girl!)
2. Social: 22 weeks
3. Fine Motor: 16 weeks
4. Gross Motor: 14 weeks, 6 days
5. Play: 18 weeks
As you can see she is far behind in many things..which can be worked on but it is disheartening at the same time. What is most disheartening to me is that I feel as though Riley is falling to the side during all of this. There are many appts that aren't okay for her to go to (waiting rooms aren't fun for toddlers) so I leave her with friends who have kids similar in age. When therapists come to the house for Bree, Riley gets to watch cartoons so that she is quiet and out of the way. I feel as though I am not being a good enough Mom to Riley.
Bree requires so much attention and help with everything that I don't know how to get back to playing with Riley before Bree needs something else. I feel that this new schedule we will start when we back from vacation is going to occupy so much time I am not going to have time left for Riley. Adam and I have even thought about putting Riley into day care two days a week just to have time to do all of Bree's appts (and to relieve our friends) but we cannot even do that because RSV season is coming up and we can't risk bringing it into the house and getting Bree sick. So, I don't know where that leaves me...but I will figure it out. I'm going to have to because I have no other choice. It's amazing what you can do when you have no other options.
Sorry to make this post about my frustrations at the moment...but that is what is going on in our lives today...and tomorrow...and the day after. All we can do is take it one day at a time. And to love each other.
Here's the rundown: We went to go be evaluated on her development today. We see AJ Pratt who is with Phoenix Children's. Now this lady knows her stuff! She is very educated and has great connections at PCH so she is going to get Bree the help that she needs.
The help that Bree needs has greatly expanded. Within the hour of our evaluation we rounded ourselves up four referrals for other specialists. First the referrals:
1. Intensive Feeding Therapy - That was not a big surprise to us. She refuses bottles no matter what we do. Every so often she'll comply and do great, but usually it's refusal.
2.Neurologist - We get to go back and see Dr. Teodori for some concerns with her muscle movement. She is very 'jittery' with her movements and while that was okay at 3 months adjusted age, she should have well outgrown it by now. I am sure we will be referred to have an MRI done.
3. Nuerosurgery - Yup, nuerosurgery...Bree's skull plates are not growing together correctly and she has problems with the 'sutures' (where two skull plates meet) that are in her forehead area. She has a ridge that runs down the front of her forehead. This could potentially limit her brain growth so we need to have it looked at and followed. I am sure we'll need an MRI for this as well. (maybe they could just do one and use it for both purposes?)
4. Physical Therapy - I will elaborate more in the next portion of the blog, but again, not a surprise...just another thing to try and squeeze into our schedule.
Now onto the evaluation portion. I showed AJ some pictures on my phone of Bree doing tummy time, and explained how she will not push up on her arms. After some evaluation and play, she explained that Bree has very loose shoulders. She does not have good muscle strength in that area and that is holding her back from doing many things she should be. Because of her poor shoulder muscle strength, she is unable to push herself up when on her tummy, she is unable to play with toys in a certain way when sitting up (it's hard to explain but makes sense), and so on and so on.
In order to understand her 'placement' on the developmental chart one must know her adjusted age. This is counted from her due date (December 19) to today's date. So, as of today, Bree is 28 weeks and 3 days old. Here's how she rates in the following categories:
1. Language: 32 WEEKS!!!! (that's my girl!)
2. Social: 22 weeks
3. Fine Motor: 16 weeks
4. Gross Motor: 14 weeks, 6 days
5. Play: 18 weeks
As you can see she is far behind in many things..which can be worked on but it is disheartening at the same time. What is most disheartening to me is that I feel as though Riley is falling to the side during all of this. There are many appts that aren't okay for her to go to (waiting rooms aren't fun for toddlers) so I leave her with friends who have kids similar in age. When therapists come to the house for Bree, Riley gets to watch cartoons so that she is quiet and out of the way. I feel as though I am not being a good enough Mom to Riley.
Bree requires so much attention and help with everything that I don't know how to get back to playing with Riley before Bree needs something else. I feel that this new schedule we will start when we back from vacation is going to occupy so much time I am not going to have time left for Riley. Adam and I have even thought about putting Riley into day care two days a week just to have time to do all of Bree's appts (and to relieve our friends) but we cannot even do that because RSV season is coming up and we can't risk bringing it into the house and getting Bree sick. So, I don't know where that leaves me...but I will figure it out. I'm going to have to because I have no other choice. It's amazing what you can do when you have no other options.
Sorry to make this post about my frustrations at the moment...but that is what is going on in our lives today...and tomorrow...and the day after. All we can do is take it one day at a time. And to love each other.
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