Prayers are needed for our hydro family. I have "met" some incredible families through the Internet (some even IRL) that also have children with hydrocephalus. We support each other through our journey and all the ups and downs that having a child with hydrocephalus can bring.
Please say a prayer tonight for Matthew who will be having surgery on Friday to have a tracheostomy placed to help him breathe. Also say a prayer for Elisabeth, who recently had a shunt revision and is now experiencing severe pain which has doctors stumped.
Thank you for your prayers.
Thursday, March 29, 2012
First Pedi
Last weekend, Norah had her first pedicure during girls' weekend. I told Norah a couple weeks ago that we were going to be going to see Granny and that when we did she was going to get her nails painted. So was so excited and asked about it everyday leading up to our trip. So our first activity of the weekend was to get our toes painted with Granny. Norah loved her first pedicure! Only getting to choose one nail color was difficult, she loved all the pretty colors. She was so cute while sitting in the chair, soaking her little feet. You could tell she really enjoyed having her feet pampered.
The result . . . .
Beautiful blue toes with flowers painted on. We put Norah's SMOs away for the day to sport some cute sandals that showed off her pretty toes.
Monday, March 12, 2012
Birthday Gifts For Grant
Birthday fun for a 4 year old is not complete without presents. Pretend play is abound is our home lately so why not add some fun clothes to add to the experience, so Norah picked out some fun costumes for Grant.
Grant also received a fun Hex bug, from Mason.
Last but not least Jason and I gave Grant a camera. Grant is frequently taking our camera, so we decide we would get him his own. I can't wait to take out the memory card and see what he has captured.
Grant smiling for the first picture on his camera. I can't believe I don't have one of him taking pictures.
Grant approved!
Grant also received a fun Hex bug, from Mason.
He has loved chasing it all over the house. I love the expression on Grant's face oooing over his new toy. Then there is Mason checking it out trying to figure out how he is going to take it away (most likely to put it in his mouth).
Last but not least Jason and I gave Grant a camera. Grant is frequently taking our camera, so we decide we would get him his own. I can't wait to take out the memory card and see what he has captured.
Grant smiling for the first picture on his camera. I can't believe I don't have one of him taking pictures.
He was just so excited about all his gifts.
Happy Birthday Grant! I hope you enjoyed your day.
Wednesday, March 7, 2012
Appointment Updates
The last couple of days Norah and I have had lots of Mommy Daughter time while we hung out going to doctors appointments.
The first appointment was yesterday, which was also our last appointment in the neonatal followup clinic. Norah has been going every 6 months since she was discharged from the NICU. I have enjoyed these visits because they let me know how Norah is doing developmentally but more importantly they always give me great resources for followup or new ideas to pursue. Alas they only follow you until you are 3 years old, so no more visits for Norah because in 5 months time we will be celebrating Norah's 3rd birthday.
We always meet with a nurse case manager, physical, occupational and speeck therapist, and the developmental neonatalogist. The PT that usually meets with us yesterday was unable to make it to the appointment (bummer I wanted Norah to show off her new walking skills), but the OT and SLP were there and worked with Norah. It was no surprise that Norah doing great (at or above adjusted age) for her fine motor skill, cognitively and with her expressive language. The surprising results was that Norah's receptive language (her ability to understand) is beginning to fall behind. They gave me lots of great ideas on how to work on developing this with Norah, as well as the name of a psychologist who specializes in improving learning abilities in children with brain injuries. They cautioned me to be aware that when Norah begins school to watch her closely because her expressive language is so good, it may fool people into believing she understands a concept when in fact she does not.
We also talked about Norah's low weight, she weighed in a 22lbs 8oz, below the 3rd percentile. Norah has been struggling with weight gain but has also developed some problems with constipation. If you are full of poop, your desire to eat isn't there. A new plan to get the pooping issue under control was made, and if we don't see a change in 2 months, a recommendation of a doctor to followup with was given to us. We will continue to work on getting more calories in and putting on weight. So I need to put peanut butter M&Ms on the shopping list again - Norah's favorite.
Today Norah and I headed off again to have a MRI done then followup with her neurosurgeon. After we waited for 2 hours in the exam room (yep, I was getting inpatient and frustrated). We spoke with Norah's neurosurgeon. Norah continues to have slit ventricles, that put her at a higher risk of shunt malfunction and a Chiari malformation. We discussed where we should go from here. At this point, they believe Norah chiari is an independent problem, at one point there was concern that because her ventricles were slit like there may be pressure that was not being scene that was causing the chiari. Again they don't think this is the case anymore. Norah continues to have problems with ataxia, despite making great progress in balance and walking in the last six months. Is this just Norah or is it the chiari? Norah has also developed a mild tremor when reaching out for things or most noticeable when she wakes up from sleeping. Along with Norah's poor weight gain and feeding issues, there is concern that this is all coming from her chiari. But surgery to correct a chiari malformation is BIG, nothing that you say let's give it a try and see where things go from here. We decided the next thing we could do to see what kind affects the chiari is having on Norah is to do a sleep study. He said that if Norah has sleep apnea it may be worthwhile to pursue surgery sooner rather than waiting to see if symptoms of her chiari get worse.
That's what I have for now, I'm still processing the information. I am one of those people who needs a couple days to process information, put it together in my mind, then the questions come and better understanding. I feel truly blessed with how Norah is developing. I do have concerns and fears about Norah's receptive language. I also want to make sure we are doing what is good for Norah medically. It is hard to know when to push for more answers and when to accept things as they are, thank goodness I have my faith and know the power of prayer.
 |
| Norah sitting in the doctor's chair waiting at her appointment. |
The first appointment was yesterday, which was also our last appointment in the neonatal followup clinic. Norah has been going every 6 months since she was discharged from the NICU. I have enjoyed these visits because they let me know how Norah is doing developmentally but more importantly they always give me great resources for followup or new ideas to pursue. Alas they only follow you until you are 3 years old, so no more visits for Norah because in 5 months time we will be celebrating Norah's 3rd birthday.
We always meet with a nurse case manager, physical, occupational and speeck therapist, and the developmental neonatalogist. The PT that usually meets with us yesterday was unable to make it to the appointment (bummer I wanted Norah to show off her new walking skills), but the OT and SLP were there and worked with Norah. It was no surprise that Norah doing great (at or above adjusted age) for her fine motor skill, cognitively and with her expressive language. The surprising results was that Norah's receptive language (her ability to understand) is beginning to fall behind. They gave me lots of great ideas on how to work on developing this with Norah, as well as the name of a psychologist who specializes in improving learning abilities in children with brain injuries. They cautioned me to be aware that when Norah begins school to watch her closely because her expressive language is so good, it may fool people into believing she understands a concept when in fact she does not.
We also talked about Norah's low weight, she weighed in a 22lbs 8oz, below the 3rd percentile. Norah has been struggling with weight gain but has also developed some problems with constipation. If you are full of poop, your desire to eat isn't there. A new plan to get the pooping issue under control was made, and if we don't see a change in 2 months, a recommendation of a doctor to followup with was given to us. We will continue to work on getting more calories in and putting on weight. So I need to put peanut butter M&Ms on the shopping list again - Norah's favorite.
Today Norah and I headed off again to have a MRI done then followup with her neurosurgeon. After we waited for 2 hours in the exam room (yep, I was getting inpatient and frustrated). We spoke with Norah's neurosurgeon. Norah continues to have slit ventricles, that put her at a higher risk of shunt malfunction and a Chiari malformation. We discussed where we should go from here. At this point, they believe Norah chiari is an independent problem, at one point there was concern that because her ventricles were slit like there may be pressure that was not being scene that was causing the chiari. Again they don't think this is the case anymore. Norah continues to have problems with ataxia, despite making great progress in balance and walking in the last six months. Is this just Norah or is it the chiari? Norah has also developed a mild tremor when reaching out for things or most noticeable when she wakes up from sleeping. Along with Norah's poor weight gain and feeding issues, there is concern that this is all coming from her chiari. But surgery to correct a chiari malformation is BIG, nothing that you say let's give it a try and see where things go from here. We decided the next thing we could do to see what kind affects the chiari is having on Norah is to do a sleep study. He said that if Norah has sleep apnea it may be worthwhile to pursue surgery sooner rather than waiting to see if symptoms of her chiari get worse.
That's what I have for now, I'm still processing the information. I am one of those people who needs a couple days to process information, put it together in my mind, then the questions come and better understanding. I feel truly blessed with how Norah is developing. I do have concerns and fears about Norah's receptive language. I also want to make sure we are doing what is good for Norah medically. It is hard to know when to push for more answers and when to accept things as they are, thank goodness I have my faith and know the power of prayer.
Monday, March 5, 2012
Grant's Birthday Playdate
Grant made one request for his birthday, to play with all his friends at Kids In Motion.
That was one wish I could grant my Grant! A party and playdate combined together for one fun day. I loved how the day before I stopped at Sam's Club and bought cupcakes to bring. Grant asked if we could bring strawberries to share with his friends, so extra strawberries were brought for everyone to enjoy along with their pizza and cupcakes!
Grant's Birthday Dinner
Grant requested all of his favorites for his birthday dinner - corn dogs, coleslaw, red peppers and strawberries.
I loved that Grant is now old enough to make such a request and I was happy to whip up this meal for him. Grant even helped me make the coleslaw.
Thursday, March 1, 2012
Grant is FOUR!!
Happy Birthday to my firstborn. The one who opened up a whole new world to me, motherhood. I have watched you with amazement everyday, each day you learn something new, ask questions, work hard and show your love. I love you, Mr. Grant!
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