To make a long story short because I only have the energy for the abbreviated version right now. The details are too involved and more medical than I care to explain right now. Basically we didn't learn much else and there was a lot of negativity in this meeting. I usually go into these meeting with my negativity armor on but today it was breached.
The words stung and my hopes were somewhat shaken. In a nutshell, we were told the fact that she isn't babbling by the age of 2 when she should have between 50-200 words is concerning. Her slowed head growth could mean it’s not going to do much else and we don’t know what her capacity is to learn. These words hung in the air like black smoke that I could not fan away. I was left with images of Erin with the mind of a 2 year old in the body of a 20 year old not being able to care for herself or having a husband or child. She has been progressing slowly but the thought of her abilities reading reach a plateau is not something I am ready to except. No one had ever been so forth coming and I don’t know how to feel. Up to know I have pushed all the negativity aside and maybe that’s naïve but it’s the only way I can cope and move forward. I am her biggest cheerleader and for ME to start doubting her abilities really burst my bubble and made me mad at myself. They want her to have another MRI and EEG to see if they see anything new from her past MRI. They are really unsure of any solid reasons why she is delayed other than her microcephally (small head = small brain) The head grows as the brain grows and if that isn’t happening the head doesn’t find a need to get bigger.
I am really trying to refocus and tell myself we still don’t know what she can do but today was not a great day for us. After a good cry that I at least waited to do after we got out of the doctor’s office I know we could have it SO MUCH WORSE and the fact that she doesn’t have any real medical issues we are blessed. I’m fighting some demons right now with future worries but I will win and Erin will get the best of her Mom but I’m human and right now I’m pretty upset and need a little time to reset my heart and soul. Ultimately it is what it is, and she is exactly how God intended her to be. I need to stop trying to change what God has set in place and reach a higher level of acceptance.
I love this little girl more than I can express and I only want the best for her, as all mothers do. Thanks for reading. We appreciate all your prayers.
Erin Rock'n Piggies!
2 years Old
Monday, June 27, 2011
Friday, March 4, 2011
The cavalry...I mean Physiatry has arrived!
You know when the clouds part and reveal a perfectly blue sky and suddenly a bright colorful rainbow appears...that's a glimpse of how I felt today. I feel like 200 lbs have been lifted from my shoulders. Like I was being heard for the first time during the past 10-15 months of Erin's mysterious diagnosis. Like it wasn't all in my head! Why all this euphoria you ask? It was my physiatry appt. To say it was amazing would be an understatement.
Sean and I thought we were going somewhere to discuss Erin's physical behavior with one doctor. They'd look at her, we'd leave and still feel like we don't know anymore than before or where to turn next - NOT the case today. After we checked in we were greeted by a TEAM of specialsts. Just when I thought we had met everyone another doctor introduced themselves. I couldn't believe they were all here to see me...Erin. I thought Hmm, maybe they read her medical write up and want to do a case study - is she really that bad or unusual!? Much to my delight and surprise this is just how they roll at this office.
They escorted us into a large room that was less like a doctor office's and more like an amusement park or mini gymnasium. There were mats on the floor, stair climbers, jump ropes, balls, toys and special walkers and tables. As they explained what specialty each person had they explained what they would be doing. After they asked alot of questions they put a large mat on the floor and play time began. The team sat in a circle will Erin in the center. They evaluated her movements, bantered back and forth about posterior this and range of motion that. They cheered her on as she tried to reach for things or follow an instruction. They picked up on things that E.I. had not mentioned. Things even I as her mother didn't notice. They listened, they explained everything, they told me what she needed next and then told me what she will need AFTER next. We had a game plan ~ Finally!
After the evaluation was over they said she should be fit for bilateral AFO's (ankle-foot orthosis/ankle braces) which will help her stand correctly, they wrote her a prescription for a stander that will help her core and leg muscle strength and get her up and present in the world instead of on the floor all the time. They increased her physical therapy for once a week instead of once a month (in addition to her OT, Developmental Specialist and speech) they discussed equine therapy once she turns 2.5. They got her an appt. with a GI specialist when everyone else told me it was just a laundry problem.
I was expected so little but was given so much. Prayers answers...again Thank you :) ~ (wink, wink), God.)
Great day!
Sean and I thought we were going somewhere to discuss Erin's physical behavior with one doctor. They'd look at her, we'd leave and still feel like we don't know anymore than before or where to turn next - NOT the case today. After we checked in we were greeted by a TEAM of specialsts. Just when I thought we had met everyone another doctor introduced themselves. I couldn't believe they were all here to see me...Erin. I thought Hmm, maybe they read her medical write up and want to do a case study - is she really that bad or unusual!? Much to my delight and surprise this is just how they roll at this office.
They escorted us into a large room that was less like a doctor office's and more like an amusement park or mini gymnasium. There were mats on the floor, stair climbers, jump ropes, balls, toys and special walkers and tables. As they explained what specialty each person had they explained what they would be doing. After they asked alot of questions they put a large mat on the floor and play time began. The team sat in a circle will Erin in the center. They evaluated her movements, bantered back and forth about posterior this and range of motion that. They cheered her on as she tried to reach for things or follow an instruction. They picked up on things that E.I. had not mentioned. Things even I as her mother didn't notice. They listened, they explained everything, they told me what she needed next and then told me what she will need AFTER next. We had a game plan ~ Finally!
After the evaluation was over they said she should be fit for bilateral AFO's (ankle-foot orthosis/ankle braces) which will help her stand correctly, they wrote her a prescription for a stander that will help her core and leg muscle strength and get her up and present in the world instead of on the floor all the time. They increased her physical therapy for once a week instead of once a month (in addition to her OT, Developmental Specialist and speech) they discussed equine therapy once she turns 2.5. They got her an appt. with a GI specialist when everyone else told me it was just a laundry problem.
I was expected so little but was given so much. Prayers answers...again Thank you :) ~ (wink, wink), God.)
Great day!
Tuesday, March 1, 2011
Erin's Genetics Follow up
After spending the day at Children's in Boston we did get one solid answer --- NO Rett Syndrome or any other major known disorders.
~+ Praise God +~
She does have 3 mutations in her genes that need more comparisons (against our blood) which we gave while we were there. This will tell them if it's something we passed on or something that "starts" with Erin. It will also determine if or what percentage any future pregnancies could result in similar disorders. Genetics wants to get the results from our tests before doing any further testing for Erin. Bottom line even when genetic codes are translated there most likely won't be a magic "pill" or cure. They may find out what the mutation is but there is a good chance nothing can be done once they know. We will follow up with neurology since we haven't seen them since October. We were also put on a 4-6 month wait list for the Development medicine center where she will be evaluated by a team of doctors. I have NO idea why this was just NOW mentioned during past visits. The only reason we found out is because WE specifically asked if there was such a thing. What I don't understand is why on earth after the first visit we had with them for global developmental delays why we weren't immediately signed up for this center. I'm kind of devasted we did not asked ourselves but I didn't know such a thing existed and I trusted the 7+ doctors see has seen to mention it. Not to pass blame but just another confirmation that no one is looking after your child like you can! Do your research and ask.
We pray she continues to make progress, develop and grow into the unique little girl God intended her to be ~ normal or not (whatever that is.) She has an appointment on Friday with physiatry for pediatric equipment evaluation. I'm expected to find alot of resources at this appointment.
At this point not much else we can do but to love her like crazy, work with her, educate ourselves and be her medical advocate and have faith that this is all apart of the Lords plan.
A good day overall ~:)
~Thank you all so much for all the love and support~xoxox Love, The Quinn Family
~+ Praise God +~
She does have 3 mutations in her genes that need more comparisons (against our blood) which we gave while we were there. This will tell them if it's something we passed on or something that "starts" with Erin. It will also determine if or what percentage any future pregnancies could result in similar disorders. Genetics wants to get the results from our tests before doing any further testing for Erin. Bottom line even when genetic codes are translated there most likely won't be a magic "pill" or cure. They may find out what the mutation is but there is a good chance nothing can be done once they know. We will follow up with neurology since we haven't seen them since October. We were also put on a 4-6 month wait list for the Development medicine center where she will be evaluated by a team of doctors. I have NO idea why this was just NOW mentioned during past visits. The only reason we found out is because WE specifically asked if there was such a thing. What I don't understand is why on earth after the first visit we had with them for global developmental delays why we weren't immediately signed up for this center. I'm kind of devasted we did not asked ourselves but I didn't know such a thing existed and I trusted the 7+ doctors see has seen to mention it. Not to pass blame but just another confirmation that no one is looking after your child like you can! Do your research and ask.
We pray she continues to make progress, develop and grow into the unique little girl God intended her to be ~ normal or not (whatever that is.) She has an appointment on Friday with physiatry for pediatric equipment evaluation. I'm expected to find alot of resources at this appointment.
At this point not much else we can do but to love her like crazy, work with her, educate ourselves and be her medical advocate and have faith that this is all apart of the Lords plan.
A good day overall ~:)
~Thank you all so much for all the love and support~xoxox Love, The Quinn Family
Tuesday, February 22, 2011
Erin's 1 year Early Intervention Evaluation
Unfortunately I have to start this blog with the word Unfortunately...but unfortunately Erin's evaluation was not the stellar report we had been hoping for. She is 20 months and her overall average was @ an 8 month level. She has made some progress but not the kind of progress I thought she would've made. The OTs were here for about 2 hours and at the end when they read me the eval results I had to dig deep as to not burst into tears in front of them. I think they could tell so they were trying to be encouraging but I knew. They wished they had better news to give me.
I forgot how difficult "eval days" are. You have nothing but high hopes as the testing starts eager to celebrate in her triumphs but soon realize as they work through the steps that she isn't cooperating. You continue to be positive and say to yourself "she missed that one, but she'll get the next one" The disappointment grows. The tests is over. I try to laugh it off and be social but you can't help face the fact that something is definitely wrong. We have no diagnosis so I can't even grasp onto something to strive toward to help fix. Because we have no diagnosis no funding is available for therapy or other resources. We sit and discuss all the results of the test and I ask my miriad of questions to see if I can get ANY information about what hey think is going on but it's too hard to determine. After my Q&A we easily determine she qualifies for E.I. services.
Next evaluation will be her 2.5 years where we will start to discuss a transition into the school system if that's what we decide. Until then we have a long road and hopefully ALOT of progress to be made.
I hold my 4 month old in my arms as I say good-bye and feel the tears rising as I shut the door behind them. I cannot help wonder maybe I didn't work with her enough. What could we have done more of to help her along. I have a good cry and I'm over it. This only resparks my desire to work harder with her and see what we can learn together.
Thank you for ALL the love, support and prayers for my daughter. Your support means so much to us. Love Kellee & Erin
I can do all things through Christ that strengthens me. Philippians 4:13
I forgot how difficult "eval days" are. You have nothing but high hopes as the testing starts eager to celebrate in her triumphs but soon realize as they work through the steps that she isn't cooperating. You continue to be positive and say to yourself "she missed that one, but she'll get the next one" The disappointment grows. The tests is over. I try to laugh it off and be social but you can't help face the fact that something is definitely wrong. We have no diagnosis so I can't even grasp onto something to strive toward to help fix. Because we have no diagnosis no funding is available for therapy or other resources. We sit and discuss all the results of the test and I ask my miriad of questions to see if I can get ANY information about what hey think is going on but it's too hard to determine. After my Q&A we easily determine she qualifies for E.I. services.
Next evaluation will be her 2.5 years where we will start to discuss a transition into the school system if that's what we decide. Until then we have a long road and hopefully ALOT of progress to be made.
I hold my 4 month old in my arms as I say good-bye and feel the tears rising as I shut the door behind them. I cannot help wonder maybe I didn't work with her enough. What could we have done more of to help her along. I have a good cry and I'm over it. This only resparks my desire to work harder with her and see what we can learn together.
Thank you for ALL the love, support and prayers for my daughter. Your support means so much to us. Love Kellee & Erin
I can do all things through Christ that strengthens me. Philippians 4:13
Monday, December 13, 2010
Some Genetic Results
Today I received a phone call from our neurologist at Children's. When I heard his voice my heart sank. He said they received some results back from one of the three tests which shocked me. I wasn't expecting to hear back for months. The test they received back was for the chromosomal micro array; which tests 100's of different cells. He said 3 cells looks suspect but that didn't neccessarily mean anything significant for Erin.
In order to determine whether it's something significant Sean and I both need to be tested to see if our cells match her cells. If her cells are the same as ours it should not mean anything to her. If it's a new change within her cells that might be the reason for some of her developmental delays. I asked him if he knew what the outcome would be from the 3 "different" cells but he said he wouldn't know until we were tested. I also asked him if this meant anything regarding Rett but he said that result was not back yet and they have nothing to do with the chromosomal micro array. He told me that the genetic councelors would be in touch to schedule an appointment for our tests to be done so they could research whether they matched ours. More tests, more waiting, but we are trusting in the Lord and waiting patiently.
In order to determine whether it's something significant Sean and I both need to be tested to see if our cells match her cells. If her cells are the same as ours it should not mean anything to her. If it's a new change within her cells that might be the reason for some of her developmental delays. I asked him if he knew what the outcome would be from the 3 "different" cells but he said he wouldn't know until we were tested. I also asked him if this meant anything regarding Rett but he said that result was not back yet and they have nothing to do with the chromosomal micro array. He told me that the genetic councelors would be in touch to schedule an appointment for our tests to be done so they could research whether they matched ours. More tests, more waiting, but we are trusting in the Lord and waiting patiently.
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