In the words of Addy's geneticist, we're going to let Addy be Addy for awhile. The news from our phone conversation wasn't surprising, we honestly were expecting it; yet it is still really nice to hear. All of the tests that were run in May came back normal. There were several tests run (and no I don't know the names of all of them, just that it was for metabolic disorders that could be tested for by blood tests and were treatable or really bad) and each one came back perfectly normal. The geneticist wants to have a telephone consult with us after Addison's second birthday (which will be in September...how is that possible?) just to check in and make sure no other concerns have come up. Also, if there are any other things that come up (such as seizures, or regression in her development, etc.) she wants us to call her immediately. Addison's opthlamology appointment isn't until Sept. and of course her geneticist wants the results of that exam as well.
We have no idea why Addison's hearing loss has continued to progress. We have no idea why she has brain atrophy and microcephaly (well technically the microcephally is because of the brain atrophy, so I guess we do why she has that). We do know that she's not typical though; none of the symptoms seem to fit in the "normal" syndrome, yet it seemed that she must have a syndrome of some sort. She is Addy, fearfully and wonderfully made by the Creator of the Universe who loves her and has awesome plans for her. So yep, we're just going to let Addy be Addy for now - but I'm thrilled that there weren't any surprises in the blood tests - that is something to praise God for and we'd be thrilled if you joined us in giving God the praise!
Showing posts with label reflections. Show all posts
Showing posts with label reflections. Show all posts
Sunday, July 3, 2011
Wednesday, June 8, 2011
Catching Up: Day 3 in San Diego - Appointments and Sea World
Wednesday was "the day" for us in San Diego. This was the day that Addison met with her geneticist and also saw the cardiologist at Balboa Naval Medical Center. Our morning was pretty relaxed since we didn't need to leave until about 10 that morning. It was really kind of nice since the kids of course hadn't had naps or gone to bed on time since leaving for our trip. I really thought that I might be anxious or nervous the morning of Addison's appointments. Potentially one of the tests could come back positive and change things at least a little bit. I wasn't anxious though, I was concerned but I wasn't worried. It is amazing how far God has stretched me and helped me rely on Him during this process. I blogged earlier about being at peace with things, yet I know that I'm emotional...I'm human and things for me change, my emotions are intense, they are changing and I wondered if I'd have that anxiety come flooding back. It did not come back. I wanted to know results, I had a long lists of questions for the geneticist and questions for the cardiologist depending on what the ECHO showed; but I was not anxious. I just am so glad for God being the same yesterday, today, and tomorrow. I am so blessed that His word remains true and that never has He left me. My emotions and feelings change and can be all over the place, they are unreliable, they are crazy at times. God is constant and His word is true ALL the time!
The boys got to go to the drop-in care at the medical center. Amazing! How nice that I knew they would have fun while we waited at appointments. They weren't just sitting the van watching movies, they weren't going to have to sit and wait with us and I could have Chrystal with me in case I forgot to ask something or didn't remember all the details later. Loved it!
Addison met with her geneticist (which by the way it still feels odd to type that Addison has her own geneticist...I mean you know it's not exactly a normal childhood doctor) and the cardiologist. Here's her quick update medically as far as we know right now.


The boys got to go to the drop-in care at the medical center. Amazing! How nice that I knew they would have fun while we waited at appointments. They weren't just sitting the van watching movies, they weren't going to have to sit and wait with us and I could have Chrystal with me in case I forgot to ask something or didn't remember all the details later. Loved it!
Addison met with her geneticist (which by the way it still feels odd to type that Addison has her own geneticist...I mean you know it's not exactly a normal childhood doctor) and the cardiologist. Here's her quick update medically as far as we know right now.
- Geneticist visit May 25, 2011 had results from the mitochondrial panels that were run in the spring, both were normal. There were additional metabolic blood tests and urine tests run to test for some of the "really bad" things that we could test for and also for some treatable metabolic diseases. The geneticist does not know what caused the brain atrophy and microcephaly and we may never know exactly what caused it. Addison's head is growing though it remains at 3 standard deviations below the growth chart curve. There isn't a known reason right now either for her hearing loss progressing. She also felt that continuing to see the neurologist, audiologist, speech therapist, and ENT were important. Her recommendations were to have follow-up MRI/CT of the brain done annually or bi-annualy since Addison continues to do well developmentally there isn't a need to do them more frequently.
- Cardiologist said that her heart looked great and there were no additional concerns for her heart even though the EKG was abnormal - the ECHO looked perfect.
- Geneticist would like Addison to follow up with an ophthalmologist and we are arranging to see one in Vegas. This is more cautionary as some of the syndromes that are possible do affect vision and Addison has slightly slanted eyes and also small eyes. Addison's eyes though look exactly like my eyes (according to the geneticist) and I think they look just like Noah's too.
- ENT (in Vegas) would like us to get an X-ray of the sinuses to see if fluid remains because she's had a pretty much constant runny nose and "cold". Options will be discussed after this as to how to best help drain the sinuses, which are under-developed (likely because of the microcephaly). Currently the referral is approved but they are having it done at Nellis - so I have to wait for them to call me sometime in the next week to schedule it (a tad frustrating...but at least it's approved)
- Addison has a slight sensory processing issue that is being followed quarterly by an occupational therapist, we will also continue to work with her at home between visits.
- Carnetine deficiency will continue to be followed by the endocrinologist, we will have it retested in July.


Friday, May 20, 2011
Reflections at the Moment
Tonight Mike & I went to the Hands & Voices meeting held here. It turned out that we were the only family there this evening, there was the lady leading the group (who was the parent representative) and then some other professionals. The meeting was good, it was relaxed and comfortable. There was someone who was watching the kids who got to play and had a great time. The topic this evening was on behavior, specifically any issues that are encountered because of hearing loss. We didn't have a whole lot to add on that - not that we don't have behavior issues, but really Addison is right on track speech wise for her age (she probably says about 15 - 25 words...I can't think of them all but now it's bugging me and I think I'll have to write them down soon). We are beginning to add more signs to our vocabulary and those help as well. Addison is definitely beginning to show her opinions more often, but I don't know that it's much different than it was with the boys.
The conversation did bring up other concerns we had. Specifically how her hearing has been tested. We have had ABRs, but haven't begun booth tests. We would like to do those successfully as soon as possible - it means less invasive procedures (no sedation). Addison is still young though, I don't think she would cooperate yet with booth tests - however, when we left Omaha we had begun even a year ago to talk about introducing play training of sorts into her home visits. We would try a booth test before an ABR and then have the ABR so that she became comfortable and accustom to what would be asked of her in the booth tests. Essentially it would help train Addison or condition her so that she knew how to respond when she heard things during the booth tests. The audiologist who works with Early Interventions was there tonight and after talking said she wanted to have an appointment with us to begin some of that training and trails for booth tests. That is good news.
We also discussed our desire right now to learn ASL (American Sign Language). We want to expand our vocabulary of signs right now. ASL has it's own specific grammar and we wouldn't be using that grammar right now; however we want to increase our fluency with the vocabulary so that we can communicate with Addison at times she isn't wearing her aids (the bath, the pool, in the van, when she's just had enough for the day). We also have seen her hearing loss progress. Do we think that she'll lose all of her hearing? No, but we are also unsure of how profound it could end up. We don't want it to progress and her not be able to hear one day and not be able to communicate. What an awful thing that would be. We just feel like we can't afford to take that chance. Honestly, there are times that having that back up communication method will be crucial and beneficial for Addison. How frustrating it would be for me to not be able to understand what someone was saying to me so I could swim - I don't want that for Addison. We want to learn as a family, we'll all need to be able to have that back up communication. It is going to require work, and time and patience we know but we're excited. We also found out about some resources to help us learn ASL. The school district offers free classes during the school year - we can't do them now but next fall will definitely be going. In the meantime, we're going to find a good book I think and work on practicing and learning two or three new signs every couple of days.
Addison's genetic appointment is next week, less than a week away actually! It's been an interesting journey to get to where I feel I am emotionally. It's hard to describe too. I have gone from anxious and worried about the appointment to feeling at peace. Anxious and worried because there could be news at this appointment that could change things. How it could change things, well that runs the gammet: mild changes such as new medicines or vitamins that will be incorporated into daily routines to severe as in there could be additional progressive effects of a syndrome that would require more specialists or surgeries or challenges. We should have the results from the initial mitochondrial panels back at the appointment and there were some additional tests run as well. We are taking all of Addison's brain images with us for review, we have had all the records from ENT, endocrinology, cardiology, audiology, and neurology sent to her geneticist. It would be wonderful to have a "big picture" of what is going on, how each little thing affects the other things going on. I am hopeful for that. But the truth is that we may have no new answers. We may not have a syndrome to claim, we may not have an idea of how Addy's hearing will progress, it could be that we can only rule out one thing, or maybe not at all. That has also been hard. It's been over a year since we started the journey with genetics. I want everything to be fine of course.
Somewhere in the very near past though I have gotten much more at peace with things. We may not know - we could never know exactly what is going on with Addison medically. We could really be exactly where we were last year. We could also have some "serious" news. But you know, Addison has whatever is going on already going on. "Serious" news doesn't change her - if anything it helps us to be prepared to know how to help her reach her potential. I have finally gotten to where I am at peace with it all. That sounds awful to say - it almost seems like a false statement. We haven't ever been disappointed in Addison, we haven't been upset or felt the need to grieve because of her hearing loss or the other medical things that have affected her life (there's nothing wrong with those feelings, processing through them - we just haven't felt them). I have felt scared, helpless, worried, anxious. The unknown has loomed and has felt like a weight that pressed heavily on my heart throughout the day. The helpless feeling not to change Addison but to protect her from hurts she may feel in the future.
Wednesday night at church I felt the message was for me - I realize I wasn't the only one there - but seriously the whole service I felt like God was sitting next to me with his hand on my shoulder, patting my shoulder and quietly saying "it's okay that you've felt these emotions, do not feel guilty. But child do not fear my plans, be bold and courageous in your faith. Love and embrace the trials that are going to work to glorify me; watch me do amazing things, let your family be part of amazing things." At one point in the service one of the pastors shared a story and the point was that as parents we fear for our children, we wonder "who is going to love my child for them, just as they are." The point was that God asks us the same thing - who is going to love His children? His children, every single person that has been fearfully and wonderfully made; every person that God has made and loves, who's hairs have been counted, tears felt by the Creator of the Universe. Are we loving God's children like He loves them? That question at first stung, it stung my heart because that was a big fear for me - I just hadn't been able to adequately describe it. I do not worry about Addison's future and think she's not going to do this or achieve that - she's going to achieve AMAZING things and have an incredible future. But my fear has been, who is going to love her? Will she have true, unconditional love from friends? I worried about her differences being teased - her hearing aids are much more visible than some other differences we have. Will she be picked on? Sadly, the answer is probably yes she will be picked on, but I unfortunately think that the boys will experience that too. Our pastor shared how differences, special needs can seem to the world like something that changes our role as a parent; but it doesn't really change a thing. Our job as parents is to love our children, to help them reach their full potential and discover the amazing gifts that God has given them, to help them understand that God loves them and made them wonderfully in His image - nothing can change that job description.
So my worries, my fears were in a way selfish. I was afraid I would fail - that I wouldn't be able to be the parent Addison needed. That service, as I sat listening and feeling God's presence just envelope me - I was reassured again that God loves her, God has an amazing plan for her just as He has an amazing plan for each of the boys. God didn't make a mistake...and God doesn't need me to have my own plan all figured out for Addison - He's got that covered I just need to trust Him and seek Him. And you know what, I'm glad God's got it...my heart was heavy and I didn't like that heaviness...it is much better this way.
We will still be pushing for all the specialists that Addison needs, learning more and more about whatever it is we'll be facing; I'll still be the squeaky wheel when I need to be so that things get done in a timely manner despite the obstacles that the medical system here seems to create. Now I just feel like I don't have to worry and be anxious about the future - I can just trust that it's going to be awesome and good because God has promised good to us - He didn't promise it was going to be easy, but I'm going to try to find the blessings in each new trail and obstacle.
And if you read all of that - sorry it was SO long! I needed to get it all out, it needed to be written out - because I know that my stupid human brain is going to forget these things at some point, I will need to reread this and remind myself that I don't need all the answers!
The conversation did bring up other concerns we had. Specifically how her hearing has been tested. We have had ABRs, but haven't begun booth tests. We would like to do those successfully as soon as possible - it means less invasive procedures (no sedation). Addison is still young though, I don't think she would cooperate yet with booth tests - however, when we left Omaha we had begun even a year ago to talk about introducing play training of sorts into her home visits. We would try a booth test before an ABR and then have the ABR so that she became comfortable and accustom to what would be asked of her in the booth tests. Essentially it would help train Addison or condition her so that she knew how to respond when she heard things during the booth tests. The audiologist who works with Early Interventions was there tonight and after talking said she wanted to have an appointment with us to begin some of that training and trails for booth tests. That is good news.
We also discussed our desire right now to learn ASL (American Sign Language). We want to expand our vocabulary of signs right now. ASL has it's own specific grammar and we wouldn't be using that grammar right now; however we want to increase our fluency with the vocabulary so that we can communicate with Addison at times she isn't wearing her aids (the bath, the pool, in the van, when she's just had enough for the day). We also have seen her hearing loss progress. Do we think that she'll lose all of her hearing? No, but we are also unsure of how profound it could end up. We don't want it to progress and her not be able to hear one day and not be able to communicate. What an awful thing that would be. We just feel like we can't afford to take that chance. Honestly, there are times that having that back up communication method will be crucial and beneficial for Addison. How frustrating it would be for me to not be able to understand what someone was saying to me so I could swim - I don't want that for Addison. We want to learn as a family, we'll all need to be able to have that back up communication. It is going to require work, and time and patience we know but we're excited. We also found out about some resources to help us learn ASL. The school district offers free classes during the school year - we can't do them now but next fall will definitely be going. In the meantime, we're going to find a good book I think and work on practicing and learning two or three new signs every couple of days.
Addison's genetic appointment is next week, less than a week away actually! It's been an interesting journey to get to where I feel I am emotionally. It's hard to describe too. I have gone from anxious and worried about the appointment to feeling at peace. Anxious and worried because there could be news at this appointment that could change things. How it could change things, well that runs the gammet: mild changes such as new medicines or vitamins that will be incorporated into daily routines to severe as in there could be additional progressive effects of a syndrome that would require more specialists or surgeries or challenges. We should have the results from the initial mitochondrial panels back at the appointment and there were some additional tests run as well. We are taking all of Addison's brain images with us for review, we have had all the records from ENT, endocrinology, cardiology, audiology, and neurology sent to her geneticist. It would be wonderful to have a "big picture" of what is going on, how each little thing affects the other things going on. I am hopeful for that. But the truth is that we may have no new answers. We may not have a syndrome to claim, we may not have an idea of how Addy's hearing will progress, it could be that we can only rule out one thing, or maybe not at all. That has also been hard. It's been over a year since we started the journey with genetics. I want everything to be fine of course.
Somewhere in the very near past though I have gotten much more at peace with things. We may not know - we could never know exactly what is going on with Addison medically. We could really be exactly where we were last year. We could also have some "serious" news. But you know, Addison has whatever is going on already going on. "Serious" news doesn't change her - if anything it helps us to be prepared to know how to help her reach her potential. I have finally gotten to where I am at peace with it all. That sounds awful to say - it almost seems like a false statement. We haven't ever been disappointed in Addison, we haven't been upset or felt the need to grieve because of her hearing loss or the other medical things that have affected her life (there's nothing wrong with those feelings, processing through them - we just haven't felt them). I have felt scared, helpless, worried, anxious. The unknown has loomed and has felt like a weight that pressed heavily on my heart throughout the day. The helpless feeling not to change Addison but to protect her from hurts she may feel in the future.
Wednesday night at church I felt the message was for me - I realize I wasn't the only one there - but seriously the whole service I felt like God was sitting next to me with his hand on my shoulder, patting my shoulder and quietly saying "it's okay that you've felt these emotions, do not feel guilty. But child do not fear my plans, be bold and courageous in your faith. Love and embrace the trials that are going to work to glorify me; watch me do amazing things, let your family be part of amazing things." At one point in the service one of the pastors shared a story and the point was that as parents we fear for our children, we wonder "who is going to love my child for them, just as they are." The point was that God asks us the same thing - who is going to love His children? His children, every single person that has been fearfully and wonderfully made; every person that God has made and loves, who's hairs have been counted, tears felt by the Creator of the Universe. Are we loving God's children like He loves them? That question at first stung, it stung my heart because that was a big fear for me - I just hadn't been able to adequately describe it. I do not worry about Addison's future and think she's not going to do this or achieve that - she's going to achieve AMAZING things and have an incredible future. But my fear has been, who is going to love her? Will she have true, unconditional love from friends? I worried about her differences being teased - her hearing aids are much more visible than some other differences we have. Will she be picked on? Sadly, the answer is probably yes she will be picked on, but I unfortunately think that the boys will experience that too. Our pastor shared how differences, special needs can seem to the world like something that changes our role as a parent; but it doesn't really change a thing. Our job as parents is to love our children, to help them reach their full potential and discover the amazing gifts that God has given them, to help them understand that God loves them and made them wonderfully in His image - nothing can change that job description.
So my worries, my fears were in a way selfish. I was afraid I would fail - that I wouldn't be able to be the parent Addison needed. That service, as I sat listening and feeling God's presence just envelope me - I was reassured again that God loves her, God has an amazing plan for her just as He has an amazing plan for each of the boys. God didn't make a mistake...and God doesn't need me to have my own plan all figured out for Addison - He's got that covered I just need to trust Him and seek Him. And you know what, I'm glad God's got it...my heart was heavy and I didn't like that heaviness...it is much better this way.
We will still be pushing for all the specialists that Addison needs, learning more and more about whatever it is we'll be facing; I'll still be the squeaky wheel when I need to be so that things get done in a timely manner despite the obstacles that the medical system here seems to create. Now I just feel like I don't have to worry and be anxious about the future - I can just trust that it's going to be awesome and good because God has promised good to us - He didn't promise it was going to be easy, but I'm going to try to find the blessings in each new trail and obstacle.
And if you read all of that - sorry it was SO long! I needed to get it all out, it needed to be written out - because I know that my stupid human brain is going to forget these things at some point, I will need to reread this and remind myself that I don't need all the answers!
Thursday, April 7, 2011
Another Morning at the Park
We are so very blessed! Seriously, it can be a hard thing to move around any at all, it can seem even harder when you've been somewhere for 5 years and your 2 oldest children have friends they see several times a week, friends that are like family to them. Yet, God is so faithful! We spent another gorgeous morning - though seriously windy! - at the park with several friends. I truly feel blessed that I have had the chance to meet such amazing women and mothers, they encourage and support me and are just a true blessing. It is even more wonderful that we've been able to reconnect with "old" friends like Kristin. Anyway, it was a fun morning and I hope we have many more mornings at the park!

Notice there aren't many pictures of Noah...he was so busy running around playing with his friends. He was so very excited to see several friends at the park today.
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| As you can see Josh is still Batman ;-) |
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| She is such a little dare devil - it won't be long til she's all the way up |

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| Addison hanging on the monkey bars. |
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| She hung there quite a long time for such a little girl (shhhh...don't tell her she's little, I don't think she knows) |
Notice there aren't many pictures of Noah...he was so busy running around playing with his friends. He was so very excited to see several friends at the park today.
Tuesday, April 5, 2011
I have a Confession...
Okay, no one will be surprised by this confession I'm betting. But I think it's time I confess - this hobby of mine is on the brink of becoming a bit of an obession. I'm typically checking our things to leave the house and including the camera and extra lens. I'm constantly thinking about the light in places - as in this would be great light for pictures, or this isn't great light, or how would this light work? Oh and the last cloudy day we had, my first comment to Mike was how the clouds would be good coverage for afternoon pictures. And my web searches lately, not so much medical searches, but for lenses, and photography websites, oh and constantly checking Craigslist to see if there's a deal I can't pass up. It's the 5th of April and already we have had to add a "part 2" album on Facebook for pictures (geesh each album can only have 200 pictures...I mean it did take me 5 days right?). I am dreaming of lenses, and a speedlite, and driving around in search of great backgrounds, and one day maybe buying photoshop for myself. Where is this coming from? Poor Mike, and the kids - but maybe the kids won't mind so much when they are older, they're going to be so used to having a camera pointed in their direction.
On a happy note though, I think I am learning some things. I'm getting much more comfortable with the camera and learning to adjust things more easily in the midst of a shot. Oh and we are getting some pretty good pictures of the kids - which is really what led to the obsession hobby. Like this afternoon when I wanted to see how the light coming in the front window would work for portrait shots. I don't think we'll be visiting a portrait studio anytime soon - I'm having too much fun. What scares me, what I don't want to admit most of the time is that I'm starting to dream of a day when maybe I do this for real...maybe one day.



On a happy note though, I think I am learning some things. I'm getting much more comfortable with the camera and learning to adjust things more easily in the midst of a shot. Oh and we are getting some pretty good pictures of the kids - which is really what led to the obsession hobby. Like this afternoon when I wanted to see how the light coming in the front window would work for portrait shots. I don't think we'll be visiting a portrait studio anytime soon - I'm having too much fun. What scares me, what I don't want to admit most of the time is that I'm starting to dream of a day when maybe I do this for real...maybe one day.



Sunday, March 27, 2011
Waiting...but not in vain
It has been a great weekend, there was lots of fun, lots of girl time, lots of family time. Couldn't have asked for a better weekend (some minor bumps in the road of course, but there always are). So I found it strange when my heart and my head started to feel heavy, worried. Thursday we got word that Addison's blood tests were approved and by Friday I had talked to her case manager about getting the written order that her PCM would write, a packet we had to take the lab, and a number of a very helpful lady at the lab that would help us make an appointment on the right day. Apparently, there are highly specialized/specific instructions on how to handle this blood draw and the time frame that it can take to get to the lab that will complete the testing. The tests are expensive, I'm sure everyone wants it done right the first time. Suddenly though my mind has wondered - what if this...what if that..what if this and that...what do we do now? I was no longer able to focus my thoughts & energy on ensuring that the process was going smoothly to get approval and apparently I felt the need to spend that energy somewhere and that somewhere was the "what if" questions. I tried to dismiss them, but wasn't having great success. Pray, I kept telling myself, pray. I admire Mike's ability to handle the unknown, I admire his courage and his faith. He doesn't have any more answers than I do, and he's okay with that - he knows that we'll handle whatever the future holds and that we won't ever be alone to handle it on our own - he trusts that God will provide. I trust that too, yet my mind wonders. It's discouraging, it's frustrating and not how I want to feel and handle things. I prayed, and then prayed some more.
Yesterday was busy, we decided to go to church Sunday this weekend instead of Saturday. Yet this morning, our relaxed morning was just that relaxed and we lost motivation. A phone call asking what time we were leaving had us scramble to get ready, glad for the encouragement and a bit of a kick in the butt! Oh - I am not patient, I do not like waiting, but can I just say that when you wait on God - he ALWAYS shows up! There was a video clip before the sermon and a verse - John 14:1 "Do not let your hearts be trouble. Trust in God. Trust also in me." I sat there thinking, okay I'm listening. Then the ending songs repeated that to me. "Strength will come when we wait upon on the Lord, when we wait upon the Lord." I love that God always shows up, when I stop and listen and pay attention. So I feel like I'm not going to sit and wait on the lab results, I'm going to wait on God to show up and guide us on this crazy, love-filled, wild, wonderful journey and appreciate that the rain is needed for the flowers to grow; that fire is used to purify our faith and strengthen us to not depend on our own strength but on the strength that God has and will always provide.
Yesterday was busy, we decided to go to church Sunday this weekend instead of Saturday. Yet this morning, our relaxed morning was just that relaxed and we lost motivation. A phone call asking what time we were leaving had us scramble to get ready, glad for the encouragement and a bit of a kick in the butt! Oh - I am not patient, I do not like waiting, but can I just say that when you wait on God - he ALWAYS shows up! There was a video clip before the sermon and a verse - John 14:1 "Do not let your hearts be trouble. Trust in God. Trust also in me." I sat there thinking, okay I'm listening. Then the ending songs repeated that to me. "Strength will come when we wait upon on the Lord, when we wait upon the Lord." I love that God always shows up, when I stop and listen and pay attention. So I feel like I'm not going to sit and wait on the lab results, I'm going to wait on God to show up and guide us on this crazy, love-filled, wild, wonderful journey and appreciate that the rain is needed for the flowers to grow; that fire is used to purify our faith and strengthen us to not depend on our own strength but on the strength that God has and will always provide.
Tuesday, March 1, 2011
What I know...what I don't know...
This evening the boys are watching a movie in their room, Addy is eating nonstop, and I'm sitting on the couch (doing my best to allow my body to heal completely) writing questions for Addison's neurology appointment tomorrow morning. I've written them down before and thrown them away, silly I know. Very unlike me, too. I've been putting it off; it's odd, it's overwhelming, it's scary, and it makes me anxious at times. You shouldn't have to write down questions for the doctor like "why is her head not growing, it hadn't grown in almost a year" and "what are the results of the EEG/MRI/CT/chromosome study?" Then the worst was for me to write at least "what is the likely syndrome?" So yep, I have been a wuss, I've put it off, procrastinated, just plain let it get the best of me. Tonight I couldn't put it off anymore. Her appointment is tomorrow morning, we'll have a full morning of getting us all ready and the boys dropped off. This what I don't know, I have no idea what we'll find out or not find out, or still need to find out after tomorrow morning. It's scary, it's always scary when there's something unknown, but even more so when it's your child, your baby.
The good news is that there are some things that I do know. I know that Addison is happy, boy is she happy. She just exudes joy most of the time, smiles that melt your heart in an instant. She's developing like she should mentally - she is using words now, about 15 actually! She uses them appropriately, she tells you clearly what she wants. She can open doors, she can play with toys appropriately. She loves hide and seek and her brothers. Oh and she adores her dolls and stuffed animals.
I know that Addison is a blessing, she is a gift from God and has been entrusted to Mike & I. I also know that God treasures her more than Mike and I could possibly treasure her, which is beyond my understanding. I know that God has plans for Addison, plans to prosper her; God has promised that to each of us (Jeremiah 29:11 For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.) I also know that God is in control, He is wise beyond what we can understand, His love for us is complete. So tonight I'm going to try and rest in that, because I know that. I am having a harder feeling it tonight - I'm having to pray every half an hour or hour to turn it over to God once again. Thank goodness that God's Word is constant and unchanging because while my emotions may be all over the place I can have peace in the knowledge that those things are true.
Sorry for the rambling tonight, the emotional, long rambling. I'm sure I'll update after Addison's appointment in the morning.
The good news is that there are some things that I do know. I know that Addison is happy, boy is she happy. She just exudes joy most of the time, smiles that melt your heart in an instant. She's developing like she should mentally - she is using words now, about 15 actually! She uses them appropriately, she tells you clearly what she wants. She can open doors, she can play with toys appropriately. She loves hide and seek and her brothers. Oh and she adores her dolls and stuffed animals.
I know that Addison is a blessing, she is a gift from God and has been entrusted to Mike & I. I also know that God treasures her more than Mike and I could possibly treasure her, which is beyond my understanding. I know that God has plans for Addison, plans to prosper her; God has promised that to each of us (Jeremiah 29:11 For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.) I also know that God is in control, He is wise beyond what we can understand, His love for us is complete. So tonight I'm going to try and rest in that, because I know that. I am having a harder feeling it tonight - I'm having to pray every half an hour or hour to turn it over to God once again. Thank goodness that God's Word is constant and unchanging because while my emotions may be all over the place I can have peace in the knowledge that those things are true.
Sorry for the rambling tonight, the emotional, long rambling. I'm sure I'll update after Addison's appointment in the morning.
Tuesday, February 22, 2011
Blessed
These may look like pictures of a simple pizza dinner - but they are so much more than that. These are pictures that express great blessings, love, and friendship. You see, that's not just any pizza it was specially delivered from Texas...well kind of. Our good friends, Matt & Sara, had pizza delivered for us tonight for dinner. Sara called me and we were talking about meals, I told her we had meals yesterday and on Saturday and then 2 more delivered from wonderful ladies in MOPS. She said they wanted to bring us dinner, or deliver pizza for us. I ask her if she would take no for an answer, we are doing okay I'm feeling better today. Sara said she wasn't taking no for an answer and so I said yes tonight would be great. How awesome is that? God has blessed us so deeply with these incredible friends in our lives who even from hundreds of miles away helped us...even though their 2 little ones just had surgery last week too. Tonight as I was sitting here, thinking about Addison's MRI it was getting the best of my nerves, I felt anxious. But then I saw these pictures, and it was a very concrete reminder of God's provisions. God has blessed us, immeasurable blessed us and provided for us in every possible way. It may have just been pizza to some, but it was reassurance and peace for me tonight. It felt like a big hug, it was just what I needed tonight. Addison's MRI is tomorrow, and her CT scan...I know they will go well, they'll get the images they need and then we'll wait a little longer to hopefully get some more clues. I hope tonight you have had the chance to feel God giving you a hug, wrapping his arms around you with reassurance that He is all you need.
Wednesday, February 2, 2011
Wishing
Wishing...that's what I feel like I have been doing all day today. Wishing my arms were super-duper extra long and could just reach out and hug so many dear friends. Wanting to be close to each and every one of them, to be there physically and help in some practical way. Wishing I could be there to take them out for a pedicure or a McDonald's coke, to laugh with them, cry with them, to just simply sit with them. I wan to be there to help watch kiddos, or clean, or something! It is one of the things that just comes with being a military family. It is hard; but it is also part of the great joy that comes from being military. Because I wouldn't know some of the most amazing women I know without being military. I am wishing, just wishing I could do something for those who have experienced great loss while their husband was away, who have been to countless doctor appointments without a spouse, who have had to fix the random broken things in the house, who have had to do every bath, every breakfast, every diaper change, every bit of discipline. They are on the other side of the ocean raising families without family close, without family even being able to easily get on a plane or in a car to come and lend a hand. They are balancing it all with grace and beauty. They are stronger than they know, then they give themselves credit for...but they are compassionate, selfless, and without pity parties (at least one that last more than a minute or two), they are actively involved in church and school and community. So since I cannot be there, I cannot grow my arms to reach them all - will you say an extra prayer tonight for each of them and the next time you see one of these heroes give 'em a hug and some encouraging words!
Friday, January 28, 2011
Just some rambling and reflection
I have a feeling that the blog is going to become a bit therapeutic - sorry about that ;-) you'll have to put up with my rambling. This morning Addy had a home visit - typical she has one a month. It's really not a huge deal, the teacher comes to the house and is very nice and helpful. So we started with trying to get her up to speed on all that is going on and all that we don't know. Then came the sign of release of information forms, and then working. Mike was home, it was an early visit and he's days are a bit off this week, next week will be nights...it's been actually helpful. So the visit goes on, and Addy isn't in the mood to really cooperate. Honestly, yesterday she seemed a bit off - then this morning she took out one of her aids (which is odd) and when I went to put it back in, her ear was full of crusty goop. Ear infection, again! This by the way makes #3 (or at least the 3rd visit since mid December).
During the visit though, her teacher asked about her favoring her right hand. And if she was starting to relax her fists at all. Funny how things like that we don't really notice - yes probably a bit she does keep her hands in fists throughout the day. So it seems that it might be worth having a consult with an occupational therapist just to make sure that things are going okay and that she doesn't keep her muscles all tense. Her teacher also thought it might be helpful to have a consult for Addison to see a developmental pediatrician - which would be a pediatrician that would kind of make sure all the big picture things were handled...someone who has more expertize in dealing with special needs kids (which still sounds odd to me by the way) and hopefully would be able to help us coordinate things. These consults are going to be done through the early intervention program, so it could be a little bit. We're not overly concerned with her muscles, but the OT consult won't be invasive and if there is something there better to catch it early. I think that would make 13 specialists we've seen for the kids in the last 5 years...which makes me laugh. Mike and I were talking last night, I was commenting on how it almost seems normal - and that it's weird that we think it's "normal" to have so many doctors.
Anyway - leaving for ENT (for the ear infection) I honestly was feeling overwhelmed a bit...Josh is having a hard time this week, seems to be going through a phase of who is in control and in charge - fighting us on almost every little thing and having even small disappointments be HUGE deals. It is hard, I struggle with it when they go through phases like this - I think that's normal for every mom. I worry about with everything going on with Addison right now (which is really just tests and some questions waiting for answers...she's doing great, we are so very blessed!) that the boys feel the effects or don't get enough of my attention. And then Addison's teacher mentioned us trying to get more one on one time with her to do some nursery rhymes with motions (to work on that equal usage of the body) and fine motor skills....which made me feel bad/guilty because how much I feel I don't do. And then Josh is upset and really I don't want to load us all up for another doctor's visit but we have to...and the timing stinks, it means naps will be short and interrupted/late. Anyway, I felt like it was going to be one of "those days." I really was starting to feel grumpy and a bit sorry for myself (which is ridiculous!). I got in the van and was driving, praying for a better attitude - cause mine was stinking...then the song "I will praise you in this storm" (that may not be the actual title) and then another one of my favorites "Blessed be Your Name" - amazing how God always provides...God is always faithful even if it's just to remind you to not to have such a bad attitude.
Now I'm going to try and remember that for the rest of the afternoon - which is turning into a no nap (unless you count the maybe 10 minutes that were caught in the van) afternoon for anyone, with Addison being especially crabby and the boys both in "moods."
During the visit though, her teacher asked about her favoring her right hand. And if she was starting to relax her fists at all. Funny how things like that we don't really notice - yes probably a bit she does keep her hands in fists throughout the day. So it seems that it might be worth having a consult with an occupational therapist just to make sure that things are going okay and that she doesn't keep her muscles all tense. Her teacher also thought it might be helpful to have a consult for Addison to see a developmental pediatrician - which would be a pediatrician that would kind of make sure all the big picture things were handled...someone who has more expertize in dealing with special needs kids (which still sounds odd to me by the way) and hopefully would be able to help us coordinate things. These consults are going to be done through the early intervention program, so it could be a little bit. We're not overly concerned with her muscles, but the OT consult won't be invasive and if there is something there better to catch it early. I think that would make 13 specialists we've seen for the kids in the last 5 years...which makes me laugh. Mike and I were talking last night, I was commenting on how it almost seems normal - and that it's weird that we think it's "normal" to have so many doctors.
Anyway - leaving for ENT (for the ear infection) I honestly was feeling overwhelmed a bit...Josh is having a hard time this week, seems to be going through a phase of who is in control and in charge - fighting us on almost every little thing and having even small disappointments be HUGE deals. It is hard, I struggle with it when they go through phases like this - I think that's normal for every mom. I worry about with everything going on with Addison right now (which is really just tests and some questions waiting for answers...she's doing great, we are so very blessed!) that the boys feel the effects or don't get enough of my attention. And then Addison's teacher mentioned us trying to get more one on one time with her to do some nursery rhymes with motions (to work on that equal usage of the body) and fine motor skills....which made me feel bad/guilty because how much I feel I don't do. And then Josh is upset and really I don't want to load us all up for another doctor's visit but we have to...and the timing stinks, it means naps will be short and interrupted/late. Anyway, I felt like it was going to be one of "those days." I really was starting to feel grumpy and a bit sorry for myself (which is ridiculous!). I got in the van and was driving, praying for a better attitude - cause mine was stinking...then the song "I will praise you in this storm" (that may not be the actual title) and then another one of my favorites "Blessed be Your Name" - amazing how God always provides...God is always faithful even if it's just to remind you to not to have such a bad attitude.
Now I'm going to try and remember that for the rest of the afternoon - which is turning into a no nap (unless you count the maybe 10 minutes that were caught in the van) afternoon for anyone, with Addison being especially crabby and the boys both in "moods."
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