Well, we managed to keep Meghan healthy for 6 weeks straight! It was the longest amount of time she has ever stayed healthy and we enjoyed every single second of it!! However, Meghan has hit a little rough patch lately and has been very irritable/emotional, not sleeping the best and has come and go fevers - but - it's pretty common for Meghan to run low grade fevers - especially when has sensory overload (too much activity/overdoing it). She did end up with an ear infection, cold and cough a week ago, which is still lingering, so I think that is contributing quite a bit to the crankiness - as well as FINALLY getting a boat load of teeth. On top of all of this, she's recently had a couple falls - hitting her head both times :( I called Children's and spoke to Meghan's NS nurse practitioner and she reassured me as long as she isn't showing any abnormal neurological symptoms (which she isn't), she is okay. Jeff and I know what we need to watch for - but it's more reassuring for me to hear it come from the neurosurgery staff that she's okay versus hearing it from the local doctors who I trust...mmmm....not so much.
Meghan started speech therapy. She understands way more than she can say, so the first thing the speech therapist wants us to do is to introduce basic sign language to Meghan. That way, she has a way of being able to communicate to us - and others. Luke thinks it's pretty neat to teach Meghan some of the signs he's learned at school! The first group of signs we are introducing are Mom, dad, drink, eat, puppy, I love you, all done and book. She's signed "more" for a few months, so we have 1 sign down! We were also given great ideas of things to work on with her each day to improve her speech. PT/OT is going good. For some reason, Meghan's left side is weaker than normal lately. Her left side has always been her weaker side, but she sometimes goes out of her way to use her right side, even when using her left side would make things easier on Meghan.
We hope everyone has a wonderful Easter! Last Easter was spent in the hospital with Meghan after she had her shunt placed, so we are looking forward to having an uneventful Easter at home this year!
Mighty Meghan
Thursday, March 28, 2013
Thursday, March 14, 2013
Little Meggers has officially been scanned from top to bottom. In the last 21 months, she's had MRI's of her brain, neck, and spine - ultra sounds of stomach, kidneys, bladder and esophagus - x-rays of upper GI tract, and the newest x-rays of hips, legs and ankles. She had her lower extremities x-rayed last week, as requested by her therapists. The x-rays came back clear which is great!! However, Meghan's therapists wanted x-rays of her feet as well, but the doctor didn't include the feet when he put in the order (ugh!). The therapists wanted her hips and legs x-rayed to check for bone deformities which could be the reason why she has gait abnormalities. They wanted her feet x-rayed since she has moderate in-toeing. Our next adventure will bring us to Gillette Children's on April 23. We will have a consultation regarding Meghan's feet to see if she needs to be fitted for SMO's (braces that come to ankles) or not. St. Paul Children's - where we usually go - sent us to Gillette's as they also have a gait analysis lab if needed. I have waited a long time to have her feet looked at by a specialist so I am anxious for this appointment. Below is a picture of what Meghan's feet do when she stands/walks.
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| This is not Meghan's actual feet. Too impossible to take a picture of her walking and not end up with a blurred pic :) |
Sunday, March 10, 2013
What a difference a week makes! Meghan is walking again and is off all of the medications she was sent home on. YAY! Other than her neck being slightly stiff, she is pretty much back to her normal self again. It is SO great to have my cuddly, little helper back!! Luke is pretty thrilled to have his partner in crime back, too :)
Since surgery, one of the first improvements I noticed was that she now sounds like she has more of an open airway - her voice sounds clear and not as raspy. Also, one of her symptoms prior to surgery was chocking and gagging when she would eat. She did not have these issues at every meal, but it would happen about once a week. We are now almost 3 weeks post op and we have not had ANY chocking or gagging issues!!! This is huge as Jeff and I would be on edge every time she ate just waiting for her to choke - thank goodness we are both certified in first aid as we have had to put our training to use with her a couple of times. The best part since surgery......we have never seen Meghan as happy or as smiley and giggly as she has been these last couple weeks. I think for the first time since birth, she isn't in pain (other than from surgery).
Meghan has finally been cleared from her doctor to switch from her infant carrier to a big girl car seat that faces forward! As of Thursday, she weighed 19.6 pounds with clothes and shoes on - so not quite at the 20 pound mark, but given her age, he okayed her to switch. Meghan thinks it's pretty cool to see what's going on now while we're in the vehicle. Hopefully facing forward will help with her car/motion sickness, too!
Therapy resumed on Wednesday and Meghan did great. I wasn't sure if she'd tolerate the entire hour of therapy but she did. My mom came over to watch the daycare kids so I could sit in on therapy with Meghan.
We placed our 2nd shirt order on Wednesday! We are definitely getting awareness out to the public!!
I am in the process of putting together a walking team for the Hydrocephalus walk. Unfortunately, an exact date hasn't been scheduled for the walk yet, but I am guessing it will be toward the middle of September like it has been in years past and it is held in the Cities (Fridley if I remember correctly). If you are interested in walking with Team Meghan, or if you'd like to donate towards the team, let me know by emailing me (jennasuess@comcast.net) and I would be more than happy to get you information regarding the walk or how you can donate. I am brainstorming fundraising ideas to raise money for Team Meghan! The more money we raise, the closer we are to finding a cure!!
Since surgery, one of the first improvements I noticed was that she now sounds like she has more of an open airway - her voice sounds clear and not as raspy. Also, one of her symptoms prior to surgery was chocking and gagging when she would eat. She did not have these issues at every meal, but it would happen about once a week. We are now almost 3 weeks post op and we have not had ANY chocking or gagging issues!!! This is huge as Jeff and I would be on edge every time she ate just waiting for her to choke - thank goodness we are both certified in first aid as we have had to put our training to use with her a couple of times. The best part since surgery......we have never seen Meghan as happy or as smiley and giggly as she has been these last couple weeks. I think for the first time since birth, she isn't in pain (other than from surgery).
Meghan has finally been cleared from her doctor to switch from her infant carrier to a big girl car seat that faces forward! As of Thursday, she weighed 19.6 pounds with clothes and shoes on - so not quite at the 20 pound mark, but given her age, he okayed her to switch. Meghan thinks it's pretty cool to see what's going on now while we're in the vehicle. Hopefully facing forward will help with her car/motion sickness, too!
Therapy resumed on Wednesday and Meghan did great. I wasn't sure if she'd tolerate the entire hour of therapy but she did. My mom came over to watch the daycare kids so I could sit in on therapy with Meghan.
We placed our 2nd shirt order on Wednesday! We are definitely getting awareness out to the public!!
I am in the process of putting together a walking team for the Hydrocephalus walk. Unfortunately, an exact date hasn't been scheduled for the walk yet, but I am guessing it will be toward the middle of September like it has been in years past and it is held in the Cities (Fridley if I remember correctly). If you are interested in walking with Team Meghan, or if you'd like to donate towards the team, let me know by emailing me (jennasuess@comcast.net) and I would be more than happy to get you information regarding the walk or how you can donate. I am brainstorming fundraising ideas to raise money for Team Meghan! The more money we raise, the closer we are to finding a cure!!
Wednesday, February 27, 2013
Meghan was discharged last Saturday and we are so happy to be back home! Meghan was probably happier than we were to be home. She was out like a rock shortly after we got home and took a 2 hour nap!
Everything is going well at home and we are keeping Meghan as comfortable as possible. We are working hard at building her strength back up as much as she allows us to. Right now she tolerates 10-15 minutes of playing/working with her and then she's ready to rest. She did start to sit unassisted on Tuesday, so that is great to see again! She still isn't able to crawl or walk. She knows she can do these things, but her body isn't allowing her to do these quite yet so she gets very frustrated. She is allowing me to help her walk - we just need to get her legs to cooperate. It is hard as a parent to see her struggle to do things she was able to do 9 days ago. I know she'll be able to do these again - I just need to be patient :) She is getting stronger each day!! When she was discharged, we were sent home with 8 different meds to give her. However, some of these are only given to her as needed. She is down to 5 meds that she gets daily. She should be down to only 1 med by the end of the weekend.
Meghan likes to have Molly by her a lot. Molly has been good therapy for Meghan! Luke comes home for a couple hours after school and Meghan lights up when she sees him. Luke was pretty worried about his sister and it was good for Luke to see his sister and to see that she is doing well! He doesn't like to see her in pain, or to see her incision, but he always has to check on her as soon as he gets home to see how she's doing. Meghan is very happy to have a break from doctors but Luke isn't so happy. He got strept throat while Meghan was in the hospital. I think this is the 4th time in less than a year so he has been referred to see an ENT tomorrow to see if he needs his tonsils removed.
Jeff and I met with Meghan's therapists this morning regarding her IFSP (Individualized Family Service Plan). We reviewed Meghan's goals from this past year and wrote new goals to add to her plan for this year. We are all very pleased with Meghan's progress! Speech therapy has been added to her plan and she will start that next Wednesday. We are so lucky to have such amazing therapists working with Meghan!!!
Everything is going well at home and we are keeping Meghan as comfortable as possible. We are working hard at building her strength back up as much as she allows us to. Right now she tolerates 10-15 minutes of playing/working with her and then she's ready to rest. She did start to sit unassisted on Tuesday, so that is great to see again! She still isn't able to crawl or walk. She knows she can do these things, but her body isn't allowing her to do these quite yet so she gets very frustrated. She is allowing me to help her walk - we just need to get her legs to cooperate. It is hard as a parent to see her struggle to do things she was able to do 9 days ago. I know she'll be able to do these again - I just need to be patient :) She is getting stronger each day!! When she was discharged, we were sent home with 8 different meds to give her. However, some of these are only given to her as needed. She is down to 5 meds that she gets daily. She should be down to only 1 med by the end of the weekend.
Meghan likes to have Molly by her a lot. Molly has been good therapy for Meghan! Luke comes home for a couple hours after school and Meghan lights up when she sees him. Luke was pretty worried about his sister and it was good for Luke to see his sister and to see that she is doing well! He doesn't like to see her in pain, or to see her incision, but he always has to check on her as soon as he gets home to see how she's doing. Meghan is very happy to have a break from doctors but Luke isn't so happy. He got strept throat while Meghan was in the hospital. I think this is the 4th time in less than a year so he has been referred to see an ENT tomorrow to see if he needs his tonsils removed.
Jeff and I met with Meghan's therapists this morning regarding her IFSP (Individualized Family Service Plan). We reviewed Meghan's goals from this past year and wrote new goals to add to her plan for this year. We are all very pleased with Meghan's progress! Speech therapy has been added to her plan and she will start that next Wednesday. We are so lucky to have such amazing therapists working with Meghan!!!
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| On my way home! I was given a couple pain meds before I left the hospital so I could handle the bumpy ride home. |
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| Molly keeping an eye on me |
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| I love Molly! |
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| Look what I can do!!! |
Saturday, February 23, 2013
Saturday
Dr. Petronio (Meghan's NS) came by to visit last night. He suggested that Meghan would probably benefit more by being home while building strength versus in the hospital where she isn't happy with all of the unfamiliar people working with her. Jeff and I agreed - we just need the pediatric doctor to agree with this and if they do, it sounds like we'll be able to go home today! We also discussed the referral to the Endocrinologist. Dr. Petronio is confident that Meghan's growth issues will resolve now that she's had the decompression surgery. He wants to wait 3-6 months and evaluate her growth at that time. If she's growing, we will cancel the referral but if she still isn't growing we will go ahead with the Endo referral. When Meghan was weighed at pre-op on Monday she weighed 18.5 pounds and was 28.5 inches long. You can do it, sweet girl!!
SMO's/X-rays of hips, legs and feet
Because little Meggers hasn't been strong enough to walk since surgery, she hasn't been able to be evaluated by the therapists for possibly needing short-term SMO's, or to see if they agree with Meghan's therapists in New Ulm about needing x-rays to look at bone structure of lower extremities. So, this is on hold until Meghan is strong enough to walk so she can be evaluated by the therapists. I was hoping we'd have answers regarding these issues before we were discharged, but I am once again reminded that this all takes time and patience. We'll get answers as soon as Meghan is ready.
The next step will be to resume therapy in New Ulm once a week. In 1-2 weeks, we'll see Meghan's primary doctor for an incision check. Then, in 3 months we'll be back here for a full brain MRI and limited spine MRI. She will need to be sedated but this MRI should only take a half hour to get the needed images. They will check her ventricles (this is for her hydrocephalus), look at the back of her brain to make sure the surgery worked and to make sure there is adequate CSF flow and they'll look at her syrinxes on her spine to see if they decreased in size since surgery.
Right now, we are just waiting for the pediatric and neuro doctors to round to see if we are able to take our little girl home today. We can't wait to get her home and back in a familiar environment. Thanks again to our friends and family for the support, thoughts and prayers!
Dr. Petronio (Meghan's NS) came by to visit last night. He suggested that Meghan would probably benefit more by being home while building strength versus in the hospital where she isn't happy with all of the unfamiliar people working with her. Jeff and I agreed - we just need the pediatric doctor to agree with this and if they do, it sounds like we'll be able to go home today! We also discussed the referral to the Endocrinologist. Dr. Petronio is confident that Meghan's growth issues will resolve now that she's had the decompression surgery. He wants to wait 3-6 months and evaluate her growth at that time. If she's growing, we will cancel the referral but if she still isn't growing we will go ahead with the Endo referral. When Meghan was weighed at pre-op on Monday she weighed 18.5 pounds and was 28.5 inches long. You can do it, sweet girl!!
SMO's/X-rays of hips, legs and feet
Because little Meggers hasn't been strong enough to walk since surgery, she hasn't been able to be evaluated by the therapists for possibly needing short-term SMO's, or to see if they agree with Meghan's therapists in New Ulm about needing x-rays to look at bone structure of lower extremities. So, this is on hold until Meghan is strong enough to walk so she can be evaluated by the therapists. I was hoping we'd have answers regarding these issues before we were discharged, but I am once again reminded that this all takes time and patience. We'll get answers as soon as Meghan is ready.
The next step will be to resume therapy in New Ulm once a week. In 1-2 weeks, we'll see Meghan's primary doctor for an incision check. Then, in 3 months we'll be back here for a full brain MRI and limited spine MRI. She will need to be sedated but this MRI should only take a half hour to get the needed images. They will check her ventricles (this is for her hydrocephalus), look at the back of her brain to make sure the surgery worked and to make sure there is adequate CSF flow and they'll look at her syrinxes on her spine to see if they decreased in size since surgery.
Right now, we are just waiting for the pediatric and neuro doctors to round to see if we are able to take our little girl home today. We can't wait to get her home and back in a familiar environment. Thanks again to our friends and family for the support, thoughts and prayers!
Friday, February 22, 2013
Friday
It sounds like we'll be able to break out of here this weekend, but that depends on Meghan's strength! She is quite weak and we're working hard at getting her strength back. She doesn't let the therapists do anything with her so they are giving Jeff and I lots of good ideas on how we can work with her to get her strength back. They also want to see Meghan to be able to sit up unassisted, which she isn't quite strong enough to do alone yet. She doesn't need to maintain her balance completely while sitting, but she needs to be able to sit by herself for a short amount of time. We seem to have a pretty good handle on her pain now. The nurse removed her IV this morning and she's getting all meds orally now! She is a happy girl to have the IV out of her foot! She is still not the happiest when we move her around, but she is atleast asking to be picked up, instead of just wanting to lay in bed. She will be getting her first bath this afternoon - yay! This will be the first bath since before surgery. Maybe that will give her some spunk! The lack of sleep seems to have finally caught up to her. She slept all night last night and she's been sleeping off and on throughout the day today. The rest is good for healing!
It sounds like we'll be able to break out of here this weekend, but that depends on Meghan's strength! She is quite weak and we're working hard at getting her strength back. She doesn't let the therapists do anything with her so they are giving Jeff and I lots of good ideas on how we can work with her to get her strength back. They also want to see Meghan to be able to sit up unassisted, which she isn't quite strong enough to do alone yet. She doesn't need to maintain her balance completely while sitting, but she needs to be able to sit by herself for a short amount of time. We seem to have a pretty good handle on her pain now. The nurse removed her IV this morning and she's getting all meds orally now! She is a happy girl to have the IV out of her foot! She is still not the happiest when we move her around, but she is atleast asking to be picked up, instead of just wanting to lay in bed. She will be getting her first bath this afternoon - yay! This will be the first bath since before surgery. Maybe that will give her some spunk! The lack of sleep seems to have finally caught up to her. She slept all night last night and she's been sleeping off and on throughout the day today. The rest is good for healing!
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| Playing with my toys |
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| Mmmm...mac n cheese! |
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| Relaxing with my favorite things from home |
Thursday, February 21, 2013
Thursday
The biggest news....we FINALLY got to hold Meghan Wednesday night!!! I can't even explain how much that helped me. Just being able to hold her and comfort her was the best feeling so far this week! She was out cold while cuddling with mom :) Meghans head bandage was removed Wednesday morning and we got our first look at her incision Wednesday evening after we held her. We were moved out of PICU to the regular floor Wednesday afternoon as well. Meghan did not like all the moving around during the move. The rooms in PICU were spacious and sound proof so we didn't hear much noise from other patients or nurses. That is not the case in the new room. It's taking Meghan (and mom and dad) a while to adjust to the noise. Right now, the biggest issue is pain management. Once we were moved out of PICU they started weaning Meghan from the pain meds. We are still working on pain management trying to figure out what works best for Meghan. She does not appear to be in pain when she lays in bed but once we move her neck or adjust her position she is not a happy girl! The physical and occupational therapists were here first thing this morning to work with Meghan. She will move her face and neck to the right, but not to the left very willingly so we are doing a few things to loosen up those muscles so it's easier for her to look to the left. We will be getting Meghan up in bed more often today to keep muscles loose as well. She is eating solids now and has held everything down so that is awesome! Meghan is a very tired little girl and she looks forward to being able to sleep in peace at home with out interruptions.
The biggest news....we FINALLY got to hold Meghan Wednesday night!!! I can't even explain how much that helped me. Just being able to hold her and comfort her was the best feeling so far this week! She was out cold while cuddling with mom :) Meghans head bandage was removed Wednesday morning and we got our first look at her incision Wednesday evening after we held her. We were moved out of PICU to the regular floor Wednesday afternoon as well. Meghan did not like all the moving around during the move. The rooms in PICU were spacious and sound proof so we didn't hear much noise from other patients or nurses. That is not the case in the new room. It's taking Meghan (and mom and dad) a while to adjust to the noise. Right now, the biggest issue is pain management. Once we were moved out of PICU they started weaning Meghan from the pain meds. We are still working on pain management trying to figure out what works best for Meghan. She does not appear to be in pain when she lays in bed but once we move her neck or adjust her position she is not a happy girl! The physical and occupational therapists were here first thing this morning to work with Meghan. She will move her face and neck to the right, but not to the left very willingly so we are doing a few things to loosen up those muscles so it's easier for her to look to the left. We will be getting Meghan up in bed more often today to keep muscles loose as well. She is eating solids now and has held everything down so that is awesome! Meghan is a very tired little girl and she looks forward to being able to sleep in peace at home with out interruptions.
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I am missing Molly, so I love cuddling with my stuffed puppy. |
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