Today, we got the best news we have received in the past 13 months! Meghan's brain MRI looks great! The size of the ventricles (hydrocephalus) are normal in size and her cerebellum (bottom part of the brain) is decompressed and is now sitting inside of Meghan's skull right where it should be (Chiari). CSF flow anteriorally and posteriorally is freely flowing! It was AMAZING to see the pre op MRI images compared to today's images. Complete difference (I will post pics when I get the CD)! The syrinx in the thoracic area (lower spine) is still there, but it decreased in size, which is what we were hoping for! Thank you God!! He would like to see Meghan in 6 months for neuro check and to check on her development, but he does not feel a need to do another MRI for a year - unless symptoms come back. Thank goodness. Today was Meghan's 5th MRI and her 3rd sedated MRI (2 of the MRI's she was not sedated for). She always came off of sedation real nicely and woke up calmly. That was not the case today. She woke up FIESTY and very disoriented. She didn't know what she wanted and fought us for a good half hour straight. Man this itty bitty 20 pounder sure is strong for her size! The nurse gave her 2 icies thinking the cold would snap her out of her fit. It helped while she was eating, but once she was done, her fit continued. The nurse said this behavior is very typical of kids ages 2 and 3 after waking up from sedation. Since her surgery 3 months ago, she grew 1.5 inches and gained 2 pounds. Pretty amazing considering it took her 9 months to gain 2 pounds before surgery!
I feel like a huge weight is lifted off my shoulder after today's news. I am so proud of Meghan. And I'm so proud of Luke for being so caring for his sister. For a 7 year old, he has seen his little sister go through more than any brother should see his sister go through. Luke is a rough n tough boy who picks on his sister as much as he can - BUT...he cries with her when she hurts - he cheers her on when she reaches a milestone - he holds her hand when she is sick - teaches her sign language so they can "talk". Bless his heart. He got up extra early this morning just to hug Meghan before we left for the cities and to tell her good luck today.
On top of all of this...Meghan has started signing "I love you" to us. I can't hear her sweet voice say those 3 awesome words quite yet, but I can watch her sign it to us and feel the love from her.
Tonight, I just feel amazingly blessed!
Mighty Meghan
Thursday, May 23, 2013
Monday, May 20, 2013
Where does the time go? This is the last week of school for Luke. I can't believe I will have a 2nd grader!! To celebrate the end of his school year, Jeff and I are taking him to Mankato to his favorite place to eat - just the 3 of us. He could use some one on one time!
Finally, we got some good news! The urologist looked at Meghan's ultra sound images and he feels that it is not necessary to do the VCUG on Meghan right now!! He said since her urinalysis came back negative, she hasn't had any UTI's yet and since the fluid on her right kidney is mild, there is no need to put her through the procedure yet. He gave us a list of symptoms to watch for. If she develops any symptoms, gets a UTI or if the fluid increases in the kidney, she would need to have the procedure. So, for now, she will have her next ultra sound in July and we will meet with the urologist afterwards to review the images and talk about a long term care plan. I am just so happy that she is in the clear for now!! Meghan is doing super in PT/OT and speech. She will get a little break during the summer months. Instead of having therapy 8 times a month, she will go down to 4 times a month as the therapists run on a summer schedule - lucky them! She is doing excellent with feeding herself and is close to mastering the scooping motion. We are still working on stabbing food with the fork. She has also mastered throwing a ball overhand and kicking a ball. We are working on placing shapes in a shape sorter. This is a little trickier for her, but she can do it. She has the patience to work on placing a shape in the correct spot, but has trouble manipulating the object to fit into the correct spot. She is walking great with her lift in her shoe. Her gait improves when she walks with the lift...her gait isn't as wide and her legs have a forward pattern. When she doesn't walk with the lift, her gait is a little wider and she swings her legs out and then forward. The lift is definitely helping! She has also mastered 6 signs and we can introduce another group of signs. In a couple weeks, we will introduce a picture board to Meghan. The ST took pictures of common things Meghan requests during the day. She will print out the pics and will laminate them and place them on a Velcro board. The idea is for Meghan to go to the board, take the picture of what she wants and bring the picture to us so we can get it for her. She is beginning to use her tongue and mouth to form "words" instead of only using the back of her throat, so this is a sign of progress! Still no new words, but it's a good sign that she is starting to use her tongue and mouth when babbling! Words will follow soon!
Upcoming appointments - Meghan's pre op this Wedensday (this is because she will be sedated for MRI) and her 3 month post op MRI on Thursday. We will meet with the neurosurgeon that afternoon for MRI results. Then on June 4 is her Geneticist appointment. A couple weeks after that, Luke has his pre op for his tonsillectomy and will have his tonsils and adenoids removed on June 20. Meghan will have an abdominal ultra sound in July and will meet with the Urologist afterwards. Then, fingers crossed, we will get a little break from doctors for a while :)
Finally, we got some good news! The urologist looked at Meghan's ultra sound images and he feels that it is not necessary to do the VCUG on Meghan right now!! He said since her urinalysis came back negative, she hasn't had any UTI's yet and since the fluid on her right kidney is mild, there is no need to put her through the procedure yet. He gave us a list of symptoms to watch for. If she develops any symptoms, gets a UTI or if the fluid increases in the kidney, she would need to have the procedure. So, for now, she will have her next ultra sound in July and we will meet with the urologist afterwards to review the images and talk about a long term care plan. I am just so happy that she is in the clear for now!! Meghan is doing super in PT/OT and speech. She will get a little break during the summer months. Instead of having therapy 8 times a month, she will go down to 4 times a month as the therapists run on a summer schedule - lucky them! She is doing excellent with feeding herself and is close to mastering the scooping motion. We are still working on stabbing food with the fork. She has also mastered throwing a ball overhand and kicking a ball. We are working on placing shapes in a shape sorter. This is a little trickier for her, but she can do it. She has the patience to work on placing a shape in the correct spot, but has trouble manipulating the object to fit into the correct spot. She is walking great with her lift in her shoe. Her gait improves when she walks with the lift...her gait isn't as wide and her legs have a forward pattern. When she doesn't walk with the lift, her gait is a little wider and she swings her legs out and then forward. The lift is definitely helping! She has also mastered 6 signs and we can introduce another group of signs. In a couple weeks, we will introduce a picture board to Meghan. The ST took pictures of common things Meghan requests during the day. She will print out the pics and will laminate them and place them on a Velcro board. The idea is for Meghan to go to the board, take the picture of what she wants and bring the picture to us so we can get it for her. She is beginning to use her tongue and mouth to form "words" instead of only using the back of her throat, so this is a sign of progress! Still no new words, but it's a good sign that she is starting to use her tongue and mouth when babbling! Words will follow soon!
Upcoming appointments - Meghan's pre op this Wedensday (this is because she will be sedated for MRI) and her 3 month post op MRI on Thursday. We will meet with the neurosurgeon that afternoon for MRI results. Then on June 4 is her Geneticist appointment. A couple weeks after that, Luke has his pre op for his tonsillectomy and will have his tonsils and adenoids removed on June 20. Meghan will have an abdominal ultra sound in July and will meet with the Urologist afterwards. Then, fingers crossed, we will get a little break from doctors for a while :)
Wednesday, May 8, 2013
It has been a busy couple of weeks at our house! Between speech, PT, OT, doctor appointments, baseball practices and meetings, life has been hectic but that's okay! The weather is finally cooperating and we have been able to get back outside and enjoy the fresh air!!
Meghan was supposed to have her 3 month post op brain and spine MRI tomorrow, but that has been rescheduled for May 23. I'm so anxious to see post op results!
We have a little more information about Meghan's kidney. She had a urinalysis last Friday which came back good - they were looking for an infection or blood. Neither were present so that is great news! It has been suggested that the next step is for Meghan to have a VCUG (Voiding Cystourethrogram) which checks for problems in the structure or function of the urinary system. It can evaluate the bladder's size and shape and look for abnormalities, such as a blockage. However, until we talk to a urologist we aren't 100% sure this will absolutely need to be done. We are hoping this will not be necessary as it does not sound like a fun procedure to put Meghan through. Otherwise, it sounds like they will just monitor the kidney by routine ultra sounds every 3 months, which she will have anyways for her hemihypertrophy condition. Right now, we are waiting to hear from a urologist on a definite next step and to get the Geneticist appointment scheduled - hopefully we can cross both of these items off of the to-do list by the end of this week.
Meghan must've been notified by someone that she is almost 2 and that when one turns 2 they need to develop an attitude :) That is okay though - I will take her feisty attitude anyday over her being sick and no energy!
Meghan was supposed to have her 3 month post op brain and spine MRI tomorrow, but that has been rescheduled for May 23. I'm so anxious to see post op results!
We have a little more information about Meghan's kidney. She had a urinalysis last Friday which came back good - they were looking for an infection or blood. Neither were present so that is great news! It has been suggested that the next step is for Meghan to have a VCUG (Voiding Cystourethrogram) which checks for problems in the structure or function of the urinary system. It can evaluate the bladder's size and shape and look for abnormalities, such as a blockage. However, until we talk to a urologist we aren't 100% sure this will absolutely need to be done. We are hoping this will not be necessary as it does not sound like a fun procedure to put Meghan through. Otherwise, it sounds like they will just monitor the kidney by routine ultra sounds every 3 months, which she will have anyways for her hemihypertrophy condition. Right now, we are waiting to hear from a urologist on a definite next step and to get the Geneticist appointment scheduled - hopefully we can cross both of these items off of the to-do list by the end of this week.
Meghan must've been notified by someone that she is almost 2 and that when one turns 2 they need to develop an attitude :) That is okay though - I will take her feisty attitude anyday over her being sick and no energy!
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| Having fun on the swing! |
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| Meghan saying good-bye to Luke before he leaves for school |
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