Back to School

It's time to head back to school!! Grant was very excited about heading off to kindergarten. This mom wasn't so sure about letting him head off to school for a full day. Is that necessary?? When I was growing up kindergarten was only a half day, when did this all change?

Grant especially loved getting to ride the bus home. Me? I was watching the clock all day and at the bus stop 25 minutes early, ready for him to get home and tell me about his day.

Norah is off to 4K. She'll be at school four half days a week, and on one of those days will be staying a little later for lunch. She is very excited about her Doc McStuffins lunch bag she gets to use on those days. Doc is all the rage here right now.

Norah Update

Overall, Norah has been well. She brings so much joy to us everyday. Most recently she has become attached to Joey, Jason's doll from when he was a little boy. Joey goes everywhere with Norah.

We started off the new year we lots of appointments. Norah saw her eye doctor. After having surgery back in May to correct her eye from turning out all the time, we now find we have the opposite problem and Norah's eyes are now crossing. Her eyes looked really good until this fall, and we continue to see more and more crossing. The plan for now is just to keep watching and see what happens.

 

Norah had a MRI to check on her shunt and chiari, then we had an appointment with her neurosurgeon afterwards. Well the day of the MRI, they were 2 hours behind schedule, so Norah's MRI was just beginning when her appointment time with the neurosurgeon came. I was an unhappy Mom at this point, because Norah must be sedated for her MRI it meant she had nothing to eat or drink since 7pm the night before when she went to bed, and it was now 1130am the next morning. This left Norah cranky from hunger and dehydration, making starting an IV a little bit more difficult. Norah liked the medications to sedate her, requiring a bit of oxygen and taking her time waking up. At one point the nurse doing her recovery just picked her up hoping that would wake her up, she just kept on snoring away. I told the nurse when Norah's out, she's out. She won't wake up until she's ready. About an hour later she was up and ready to go.

We went right to the neurosurgeon's office, now several hours after our original appointment time. Norah was seen by a PA that works with our neurosurgeon since he was no longer in the office seeing patients. Norah's most difficult problems right now is balance and after being potty trained in August, she has regressed. She is having difficulty recognizing when she has to go to the bathroom. The PA showed me Norah's MRI. Really nothing had changed. Norah still has slit ventricles, leaving just enough room for her shunt catheter. Her chiari remains.

Norah's balance, eye problems, bathroom issues, headaches and being underweight can all be attributed to her chiari.While none of these symptoms are severe by itself, all together they affect Norah's quality of life. The PA said that they don't feel that Norah's symptoms are severe enough to consider decompression surgery at this time. They would prefer to see more regression before considering surgery. While I am not one to jump right on board with major brain surgery, I do think that we should be having a better conversation about when the right time would be. I struggle because I don't want to watch Norah's symptoms become more severe. And if Norah's balance, eyes, bathroom issues, eating, and headaches would be improved by surgery, why aren't we talking about it. Those are some important quality of life issues. For now we find we live day to day, taking a deep breath when days in which Norah's symptoms are exaggerated, praying for patience and that tomorrow will be better.

Norah has continue to make improvements in her gross motor skills, but it has been at a slower pace. Most recently Norah has learned to walk down stairs alternating her feet. Our insurance company feels that Norah is not making enough improvement at this point to continue paying for her therapy. So we have begun the appeals process and pray that they reconsider. Jason and I feel that Norah not receiving therapy is not an option. We have discussed with her therapy center an out of pocket rate for therapy, it leaves us needing to pay $100 a week. I pray the insurance company changes their mind.

Last, we have contacted the school district again. We would like Norah to be reevaluated for an IEP. Norah enjoys going to the preschool we enrolled her in this year but we are being to watch her struggle with some fine motor skills that should be developing at this point. We still often wonder about Norah receptive language. Since Norah has such good expressive language, and is quick to pick up on expected answers, it hard for other to see it unless they are spending more time with her.

Throw in a bad virus at the beginning of February that kept Norah out of school for a week, that rounds out everything Norah since the Christmas.

 

ByeBye Paci, ByeBye!

Norah has finally said goodbye to her closest and dearest friend, her pacifier. Norah and her pacifier bonded a long time ago in the NICU. Her paci has always brought comfort to her in times of stress, sadness and illness.

A year ago we started to wear her from her bestie, but the tears and awful crying that accompanied this was too much for this mom to handle. At the time there a new baby brother and many doctors appointments coming up at the time, we thought it just wasn't worth it. We did however limit her paci to her crib, and when she had tests at the hospital.

The year continued on and we encourage Norah to let go her paci. She continued to say No. We let Norah know she was becoming a big girl that needed to let go. She continued to hold on. When we moved to our new house we thought we should try something new so we cut off the tip of her paci hoping this would break her tight relationship with her paci. This just showed us how tight her bond with her paci had become.

 

We were patient. We continued to encourage giving up the paci, occasionally getting an "OK" to give her paci away, but always ended in change of heart. Then the morning came were Norah woke up with a severely chapped lip. We put our foot down. We told Norah she had to let her paci go. It was no longer her friend if it was hurting her. We reinforced the idea throughout the day. I let her throw her paci away on her own. We dug up all the pacis we could find and kissed them goodbye.

 

Norah has been sad a few times since that day in the beginning of September, but we have continued to let her know how proud of her we are and what a big girl she is letting her paci go. I am happy to say we are paci free and with that we have seen big changes in our little girl.

School Days

Hugs as they were getting ready to leave for school this morning.

Today both Grant and Norah had there first day of school.

Grant has been asking to go to school for a year and looking foward to this day. He walked right into his classroom this morning and didn't look back. He was excited, very ready, and can't wait to go back tomorrow.

Norah was a bit more timid and shy. She was happy to go in and play with the kitchen and play dressup. When it came to sitting in a group and listening to the teacher, she thought continuing to play would be a bit more fun. I stayed Norah today, watching from across the room and was able to help her with her art activity. At the end of the day I asked her if she was excited to come back on Monday, she answered with a simple "No, Mommy."

Happy new school year to everyone, we hope you are blessed with a great and safe year.

Goodnight, Sweet Dreams???

June 6th Norah had a sleep study...something about that sleep study, not much sleeping occurred.

Norah's neurosurgeon requested that she have a sleep study done several months ago. He wanted to see if she is having a CNS depression that could be a result from her Chiari malformation. At this point we aren't sure Norah needs spinal decompression surgery. She does have problems that most likely are caused by her Chiari, but surgery is a big deal so figuring out when the best time to do it hard. We don't want to get to the point where she is regressing before we do it, but we also don't want to rush into it if the problems are severe. It's a big area of grey. I have learned that with hydrocephalus comes a big grey area. Example: vomiting is a symptom of shunt failure, also a symptom of over drainage, can also come along with seizures, or and the nasty bug you picked up at your play date last week. Hard to know what path to investigate first, and if you wait it out you may find yourself in a life threatening situation.

Well for those of you are curious what they hook you up to so they can monitor you while the sleep study is being perform.

• EEG watching brain activity and watching your sleep cycles.
• Cardiac monitoring watching for funky heart activity
• Leg sensors counting how frequently your legs are moving.
• Temperature sensor
• CO2 monitor
• Pulse oximetry - making sure you are taking in enough oxygen (with all this stuff on your face I'm not sure you can)
• Sensors on your face monitoring muscle movement and eye movement.
• Video monitoring

Norah didn't care for all those wires. The look in her eyes says it all, she didn't take her eyes off the sleep tech that attached it all, she lost Norah's trust.

It took Norah just over a hour to settle down. She woke up three times that first hour, twice because the technician had to come in to adjust the wires to ensure a good reading. The moment in the night where I wasn't sure if this was worth it was around 3am. Norah was awake, crying and asking for Mommy. I answered her and encourage her to go to sleep. She cried. I said everything was alright. She answered "No Mommy, it's not OK." Well that was enough to make me feel awful. Yup this was pretty much an all night torture session. She doesn't understand why this was all happening and why it needed to be done. So I spent the rest of the night in the rocking chair next to her bed and she held my hand tightly. By 4:45am she was awake and not going back to sleep, so the sleep tech started taking off all the wires and we were home by 6am snuggling in with Grant and Jason. They had made a fort in the living room to sleep in for the night.

We were supposed to be called with the results within 7-10 days. So today two full weeks later I called for the results. No one has returned my phone call yet. I guess we'll call again tomorrow.



Norah's Eye Surgery

OK I have finally found a few quiet moments to post about Norah's eye surgery this week.


Tuesday we were off to have Norah's eye surgery. She had a recession of her right lateral eye muscle. Norah's eyes do not work together. The hope is that if we correct the eye that wanders the most, her eyes will begin working together. Hopefully this will also help her balance and gross motor skills, as well as her depth perception.

We left Grant and Mason at home to have some fun with Granny who came from Minnesota to help out. Norah's surgery was at the outpatient surgery center. I was a nice break from being at the hospital where all of Norah's other surgeries have been. It was busy place, with many families coming and going. We checked in at 7:30 am, and I was mildly jealous of the family that we sat down near, who 10 minutes later was called to the recovery room because there little one was already done. DONE, before 8am. Soon to go home and recovery there for the rest of the day. Lucky them, and they left me with hope to be home by lunchtime.

In the waiting room we played and waited for about an hour - making new friends.

 

Once in our preop area, Norah changed her outfit...

her socks were just a 'bit' too big.

Vital signs were completed along with answering lots of questions. Then is was time to wait some more so Norah continued to be her silly self.

Norah loves to give 'mustache kisses' and would like to give you one as well. :)

Then she was given her goofy juice which has always left Jason and I with a funny memory. Today's included Norah's need to hold her tongue while continuing to have a conversation.

Then Dr. Ruttum put marked the right eye for surgery. Norah and I were given a couple more minutes of snuggle time.



She was off to surgery and we were off to the waiting room. The waiting room had changed from a busy area, to one with just a few families waiting for there little ones to be done with their procedures as well. An hour later Norah was back were she belonged in my arms. I was not prepared to walk into recovery to hear Norah screaming and crying. I thought she would still be pretty sleepy so to find her this way turned my emotions back up. Quickly she settled in my arms a safe place.

Her voices was very hoarse and scratchy. The anaesthesiologist stopped back to say Norah was a bit of trouble in the OR. She started to throw up as the procedure began so they ended up intubating her for the procedure. So once she was a bit more alert she had a popsicle as she finished getting her IV fluids.

Once her fluids were done and she had proven most likely she wouldn't be throwing up again. We were given our walking papers and home we went.

Once at home a present arrived for Norah from Granny. Meet Sam and Molly the newest addition to our house.

Norah only wanted juice from a juice box and on days like this she pretty much gets what she wants. This includes her pacifier which is reserved just for bed time.

Then lots of laying down, sometimes just in the middle of the floor.

Here is the icky closeup of her eye, and a buise on her forhead which no one could tell us where it came from while they had her in surgery.

The one thing that I didn't know or think alot about before surgery was after surgery care. Norah was given arm splints to wear anytime we are not there to make sure she isn't rubbing her eyes for the next week. She's not a big fan, but she tolerates these more than putting the antibiotic ointment in her eye twice a day.

Overall, four days later Norah is doing great. We had one day of  eye pain, followed by a day of poop/tummy issues, then a day of being over tired and now I think things are getting back to normal, I hope.

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.

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.

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.

Blueberries

Norah has a favorite fruit, blueberries. Once she sets eyes on those ripe blueberries, they are hers! Don't try to take them away.

Norah's game face, don't mess with her blueberries!!

If she thinks there is competition to get those berries, she starts stuffing them in double time. I'm sure some of those berries get swallowed whole. How much of this bowl did she eat herself you ask? No less than 90% of it. If she could have had it her way, all of it.

Time for the next surgery...

Norah went to see the eye doctor today...leading us to plan for Norah's 5th surgery.

The pressure caused in Norah's brain had lead to damage on some of her cranial nerves leaving her with strabismus. Exotropia is the specific type that Norah has, meaning her eye turns outward. We don't see it all the time, but it is most noticeable when Norah is tired. I see it often on days when her balance is off. In the last six months we haven't seen any improvement.

The goal for the surgery is to correct the misalignment of Norah's eyes before she loses any more vision in her right eye. This will be done by tightening the muscles of her right eye. Norah's doctor said he would usually wait until a child is closer to 4 years old but feels that if we wait too much longer her vision will get much worse. While Norah has strabismus seen in both eyes, the right is worse and so that is the eye we are going to correct. The thought is that the way her left eye deviates is actually helping to protect her right eye, and once the right eye is corrected it will correct itself.  I pray that is the case and that her beautiful blue eyes are protected from any further harm.

Silly Missy Muffin

Norah is a bit of a goof ball, easily making me smile and laugh.

Norah says she was taking a picture of me when I snapped this picture of her looking more like Mason.

Last week, as I was cleaning the kitchen she pushed a chair over to the sink. As she was about to crawl onto it, Grant quickly jumped up on it. I have a firm only one kid on a chair at a time policy. So she looks up at him and tells him to get off. He ignores her, she continues requesting nicely to have her chair. Then, "Grant get off the chair you stinker." Yup she's persistent.

While playing in her room the other day I checked in see what she was up to. I found her nursing her baby doll. Yes she sees her mommy nursing her little brother often and has begun to nurse her own dolls now. Yes, she burps them too.

Then came time to change her diaper today. As we finished and she was sitting up on the changing table, she looked me straight in the eye and said, "Mommy I need to have a conversation with you." I inquired about what, her response, "Your pimple." Yes mommy's skin does seem to be breaking out these days, thanks Norah for noticing. I glad the conversation wasn't anything more serious.


Norah tantrums are increasing in frequency these days. While we try to ignore them, I do get a good laugh when we tell her to stop it, and from the mist of tears, she'll immediately stops and says OK with a chipper voice then moves on. 


So much love I have for this little girl.

Next Steps

A month ago Norah got her new walker, a Nurmi Neo. It took nearly six months to get this walker for her, but after a lot of research I felt like this was the walker that was a right fit for Norah. Norah took off running with this walker as soon as we let her go. This walker rolled over the cracks in the sidewalk not slowing her down at all. It was much lighter than the previous walker she had. The way the walker is designed she has to stand up in the walker, she also can't rest along the back of it like she use to do. We were able to get a different set of hand grips that can be turned in so her hand alingment is closer to her body. Norah has such a small frame she previously walked with her arms out, away from a natural position. The antireverse brakes on the walker can easily be turned off making Norah work a little harder to maintain her balance. Oh so many things about this walker I love.

We went to the Mall of America the weekend before Thanksgiving where Norah shopped with me for three hours using her walker the whole time, running in the open areas of the mall and enjoying the freedom the her walker allows.

The this last week came, Jason and I noticed, as well as Norah's PT. Something is clicking in Norah's brain and her ability to walk and maintain balance. Today I can tell you is the first time I have seen Norah make an attempt to walk places within the house instead of crawling. If I saw her start crawling, all it took was a little prompt, saying Norah why don't you walk? This would have her immediately standing upright and off to her destination. Just looking at her, you can easily see how proud she is that she is able to accomplish this task. I, too, am very proud to be her mom and share this moment.

Norah is still using her walker while we are out and about running our errands, but I am so happy she is able to walk about the house independently.

Tea Party

The other morning I heard Norah playing in her room, it sounded like she was having a tea party. When I walked into the room and saw this.....

....what kind tea party is this spunky little 2 year old having?

She gave me a look, older than her years, saying "Mom, leave me alone!"

She continued on talking to her friends on her phone. With all that money on the table, I wonder if she placing some bets, like Wisconsin will return to the Rose Bowl and the Packers will be making another Superbowl appearance :)

She poured herself some tea, then decide to have a bit more.

Then offered an invitation to sit down and have some tea with her. I was honored and couldn't refuse.

I had to sit down with my little lady and find out all the current gossip, after all I had just worked all weekend. I hope years from now we are still having our fun little tea parties. 

One Size Fits All

It's official Mason is in Size 3 diapers, which happens to be the same size Norah wears. Now that we only have to buy one size I feel like we are saving money, but I know that is not the case. It just means that Norah is safe from being put in a size 2 diaper. I found myself often putting a size 2 diaper on Norah, sometimes not realizing that I had done it until the next diaper change.

Now the race is on to see who hits size 4 first.....

Return of the Paci

A month ago while we were in St. Louis, Norah threw her pacifier in the garbage. We had been working with her, encouraging her that when she was ready to get rid of her paci and be a big girl.She could give them to Mason or throw them away. She was aware of the decision she made, she told us she was a big girl and didn't want to share her paci with Mason. She's a smart one.

Well we went with it. No paci led to screaming and tears with naps and bedtime. It also took away full nights of sleep, with Norah waking up in the middle of the night, yelling out "all done sleeping." She would look at Mason's paci longingly, often stealing it and caught throwing his paci away a few times.  Jason and I stood firm, we were not going to cave.

Here we are a month later, sleep deprived and watching Norah developing terrible sleeping habits. What we decided the weekend when Norah was put to bed at 8pm, awake from 10:30pm to midnight and then up at 4am, was that it's just a pacifier. If this is what she needs for know to help her cope she can have it.

It was like reuniting her with her best friend, she was happy, oh so happy to have her paci back and sleep has returned, Thank Goodness!

The new paci rules are that Norah only gets her paci in her bed with naps and bedtime. She can't steal Mason's paci during the day otherwise she gets a time out. Let's hope sleeping through the night has returned.