Angry Bird

A few weeks ago Jason started playing Angry Birds on his phone, which led to Grant playing Angry Birds on his phone, which led to the Chrome version of Angry Birds being downloaded to our TV/computer, which led to me being introduced to a highly additive game.... I think Angry Birds will need to be deleted (but not until all levels have 3 stars).

Then tonight I noticed Mason being attacked by an angry bird!!!

Ha! I just looked over to see the bird resting on Mason's head as he naps.

Bad Day!

On Saturday I asked Grant to clean his room. A few minutes later I hear Grant crying to Jason...

Grant has cleaned his room, on his own several times in the past, sometimes without even being asked. So this went on, and on, and on. Then a few minutes later Norah started telling me this....

Oh my does she know how to copy her brother or what? I wish that this was as bad as days could get, wouldn't that be nice? I also agree with Grant, a Chai Tea Latte does help to make the day good. I hope you are having a good day :)

**By the way, their rooms were cleaned, followed by an afternoon of fun.

Neighborhood Bullies

These birds are bullying the cute, pretty birds out of our yard and I want them gone!

All summer I have enjoyed the cardinals, sparrows and robins (also a few other varieties of birds I have no clue what they are called) play in our yard, bathe in the bird bath and let Grant chase after them. That was until these big bullies showed up a couple weeks ago. Now I see the birds try to fly into our yard only to have one of these big guys fly in behind it and keep them away. I miss the pretty birds.

This brave robin is one of the few birds I have seen this week, other that the bullies.

SureSteps

A few weeks ago these little braces made their way home with us. We have been working to get these approved by our insurance since the middle of March.

Norah has had no objection to wearing her braces, and occasionally I see her trying to put them on by herself. Then sometimes I find her taking them off or Grant taking them off (he's not a fan)...overall it's been good. I see more stability in Norah's walking now that she has the braces. She is able to talk five or so steps between Jason and I that are more controlled than ever before. At therapy the last couple of weeks she has been showing off even more taking steps like a pro. Since getting these it has also shown us that her balance and coordination are lacking more so than we had realized. This makes us wonder if her Chiari malformation is more problematic than previously thought to be, especially with the eating issues and vomiting. So now that those pesky hernias are repaired this is the next problem to tackle.



We went out and bought a new pair of shoes the match her cute little braces perfectly. I love how they just blend in with her socks and shoes. I have to credit Jason with the cute pattern on her braces, he went with her for the last sizing when they were ordered and picked out the pattern. Flowers and butterflies - super cute for our little girl.

Surgery Day for Norah

Today Norah had her inguinal and umbilical hernias repaired. We have learned that with hydrocephalus hernias may come as well. Norah has a VP shunt, the tubing that is connected to her shunt ends in her abdomen. The CSF that drains into her abdomen causes increased pressure making her more susceptible to a hernia.  Surgery is the only was to correct an inguinal hernia. It was important to get Norah's hernias repair sooner rather than later because we did not want her shunt tubing to get into the hernia, which is rare but can lead to bigger problems. While often an umbilical hernia in a toddler will go away on its' own, the increased pressure makes that unlikely for Norah, even though it is really small. As long as one was being fixed it was a good time to fix everything. Her surgeon was also going to look at the other side just to make sure there wasn't a defect or a small hernia already there. So this morning we left Grant at home with Jason's mom, who the kids call Mimi, and headed to the hospital with Norah and Mason. The hospital doesn't usually allow anyone under 18 into day surgery other than the patient, but they were great about letting Mason tag along. Norah knows that when we pull up to the hospital something for her is in store, she handles it in stride. Lately we've been there a lot, and she recognizes certain areas. Whenever we get close to the radiology department she starts to hyperventilate, and been those quick breaths she starts saying "I need stickers" over and over again. It makes me smile in the moment, she's trying to cope, but my heart breaks she should have to know hope to cope with such big things already. She shouldn't have to fear being held down for a test. Today was no different, I was amazed how Norah handled everything in stride, she and Mommy and Daddy are getting better at this going to the hospital thing, it has unfortunately become part of our life.

Playing in the waiting room once we arrived this morning.

Jason and I are mastering the art of keeping Norah preoccupied, protecting her from all the big scary things happening around her. Today is was making goofy faces, reading Princess Baby (over and over and over again) and playing angry birds on Daddy's phone before surgery.

Here's a video of Norah just before surgery and after the gave her versed to relax her and start the sedation process, she's pretty cute.

After surgery, as I walked into the recovery room Norah was very upset. She did not like waking up alone, she could not get up into my arms fast enough and I was elated to have her in them again. The was two attempts to set her down, one before walking from the recovery room back to day surgery, and one right before we were discharge, just getting near the bed and the thought of being set down would bring the tears and crying, so in our arms she stayed. Mason was also a trooper throughout the day, he had a sleepy day. He slept from the moment we arrived until Norah was in surgery. He woke up and nursed like a champ, had a near blow diaper then back to sleep until we were on our way home. Amazing.

Snuggles while we wait for our discharge instructions.

Tonight at home we kept things low key, brought home some take out for supper, and made a snuggle spot on the sofa. Grant was quick to notice the bandage on Norah's tummy and help bring Norah's attention to it as well, so we changed Norah into a onesie to keep it safely covered.

 

This was our happy little girl before bed....so happy she is!

I've never been so happy or ready to move after I have had surgery, she's something special!

Norah's Appointment Update

I just asked Jason if he found today as exhausting as I did. He whole heartily agreed.



Monday Norah went for an upper GI xray. She had to go without eating until the xray was over which left us with a little girl begging for her pediasure. We went to a radiology clinic that was free standing from the hospital and closer to our house. I went in the back entrance, which was a bit of a mistake. As soon as we walked through the door, Norah saw all the different radiology rooms and began to hyperventilate. Between her breaths she was saying "I need a sticker." Over and over again. I think this little girl has been help down one two many times and been given stickers to soothe her in the situation. She put up fight for the xray but we were able to get her to drink enough of the barium while under the fluoroscope to get the pictures needed. The report shows some mild reflux, but no structural problems. Good news, but doesn't necessarily explain why she's coughing while eating, and why her chewing skills are poor.

Today was our second day this week where Norah had to go without anything to eat since the night before. This morning she went for a MRI of her head and spine which she had to be sedated for.  It was to check on her hydrocephalus, to see how her shunt and ventricles look, to look at the chiari malformation and to look at a possible syrinx in her spine. Norah started things off with a bang. She got a little over sedated initially, and kept desaturating (where your oxygen level drops) so about the time they bring up intubating her, she decided that was enough fun and began to cooperate. I must say this was the first time that we went and her IV was started with only one poke. Usually it take five, six or sometime eight to get her little veins to cooperate. I was thankful for the one poke. Norah also woke up quickly from her sedation, which was a nice change from our previous experiences.

We meet with a new neurosurgeon to the group of neurosurgeons that Norah sees. Initially I was leery to see yet another neurosurgeon. I feel comfortable, or as comfortable as you can get with the person that has to cut into your daughter's brain, with her neurosurgeon. So I wasn't sure about this, especially after researching a bit and finding out he had just finished his fellowship. In the end with all the symptoms and changes we had scene in Norah since her last formal visit in February it was important to be seen sooner rather than waiting a month to see her regular neurosurgeon. I also had a couple conversations with one of the PA's that work with the neurosurgeons that helped in making our decision. I thought this neurosurgeon was personable. He spent time talking to us. We reviewed Norah's MRI together and he pointed out different things. We discussed her slit ventricles and what that meant for Norah, giving us more understanding. Conversation was had about her Chiari malformation, it was a what came first conversation, the chicken or the egg? Or in this case, the chiari or the hydrocephalus? This lead to discussion about Norah symptoms and how they fit into all of this. Wheww! All this while Norah kept wanting to climb up on the chair and exam table, and Mason had began to wake up wanting to eat.

So what now, you might be wondering? Norah's chiari is bigger. He thinks that the pressure in Norah's head may be higher that we can see because of her slit ventricles. That because she has slit ventricles they do not always expand back open when pressure is high, making it had to see a shunt failure or anything else happening. So on Friday, Norah will once again be without anything to eat to have yet another test. This one is called a Shunt-o-gram. I feel like it should come with a post card or some silly greeting with it. They check the flow of her shunt to see where things are going and how long it take for the CSF to move around and where it goes. Then we'll talk again with the neurosurgeon. There is a high possibility that when Norah is having surgery on Monday to repair her hernias she will have a programmable shunt placed. OH did I mention on Monday Norah will be having surgery to repair an inguinal hernia and a small umbilical hernia, she is. This sweet and precious little girl of ours sure is keeping us busy lately. That's all for now, sorry for the grammatical errors, I'm exashausted. Time for bed, tomorrow morning we have therapy to go to.

Norah playing with the oversized pants they gave
her this morning because she was cold.



The Domes

I have lived in the Milwaukee area for 9 years this fall and have never gone to the domes. Yet as I drive to work I can see them in a distance, and I usually think "I need to go check those out."  It has always looked like a good place to go exploring. I have had planned playdates to meet up there in the past that have been cancelled because of sick kids or bad Wisconsin winter weather.  I finally made it there. Jason and I packed the kids in the car last week and went to the domes.

There was a savenger hunt activity to complete while we were there. Honestly I don't know who had more fun finding this hidden objects.

We had fun. It was just the right size to let Grant and Norah explore and not too busy.