1 Year Update & Photos

So excited to share some of our family photos and Nora's 1 year pictures:

Nora is doing well. She is starting to scoot around on her belly. Just this week she started to sit up on her own! I saw her do it unassisted in front of me tonight! I think once she masters this she will get more mobile. She has also started to hold her own bottle! She is resistant still to the sippy cup, so Andy installed plastic handles on her bottle that are easy for her to grip. She caught on pretty quickly and can now finish her whole bottle on her own.

Couple of Videos

Grandpa babysitting

Birthday Cake

Nora is 1!

Hard to believe it has been a whole year. Well - maybe not. A lot has happened in one year actually! Nora has spent 42 days of her 1st year at the hospital. She is also one of the busiest 1 year olds around. I have to keep a special calender for her and monitor her schedule like a personal assistant. I have a rule that only one appointment per day - which still gets broken on occasion.

Nora's birthday was on December 10. It was a blizzard so I stayed home from work. Andy was travelling home from a trip to Toronto. He made it home by dinner and I made her a cupcake to try for her first birthday. She has had a bite or two of chocolate before, but never full access to a cupcake before. She didn't really get it at first - but once she got a taste she managed to stuff some into her mouth.

On Saturday we had a small party here with pizza and cake. Nora's grandparents, cousins, aunts and uncles came. She got many nice presents. New toys and new clothes. We got her a wagon which I think we will make use of when it is warmer out to pull her around the yard. May work better than the stroller on the rough terrain. She really made a mess of her cake at the party. Covered from head to toe.

One year down! Whew!

Nora the Inchworm

We are home and Nora is returning to normal. She had a good Thanksgiving and is returning to her regular schedule. She got her stitches out earlier this week and next week she will start back with some of her therapy and should be back in full swing by mid-December.

I got a new video camera for my birthday and have been taking some videos of Nora around the house. Here is one of her "crawling."

We're Home Again!

Nora was discharged yesterday!

She did so well on her feedings. As soon as we started giving her bottles she started guzzling them down. I think she has finished every 8 oz bottle she has had since then! Since her antibiotic course is completed and the tests show no more infection, she was discharged to finish recuperating at home. She is still having periodic fevers and digestion issues, but they should improve as she rests and gets medicine at home.

We came home yesterday afternoon to a house in shambles as the house painters were working. Andy made a little spot on the basement for Nora to play away from the activity. Nora's schedule is all out of whack from the hospital. She seems to only be sleeping for 3/4 hours at a time. It is like she is a newborn again! Hopefully she will do better tonight.

Andy got to sleep an entire night in our own bed for the first time in nearly two weeks! I took the night shift with Nora last night to let him get some rest.

I am easing back into work this week as Nora continues to improve. Hopefully she will be back to 100% by next week and things will get back to normal. Whatever that is.

Thanks again to everyone for their support, prayers, gifts, food, emails, cards and more. Andy, Nora and I are lucky to have so many friends and family who care about us.

I got a new video camera for my birthday so my next post will hopefully be some happy videos instead of a hospital status update!

Beginning of Week 2

The weekend was fairly uneventful for Nora. Thankfully. She is continuing to receive her feedings through her NG tube. Still not up to her nutritional goal of 45 cc/hr. Right now she is at 30 cc/hr. Her stomach is just not digesting the stuff. She hasn't vomited since Saturday though. I believe the antibiotics will stop sometime between now and Wednesday (I get conflicting info from each Dr I talk to - so I really don't know). It may be the antibiotics that are upsetting her stomach so much. So, hopefully after she comes off of them her digestion will kick into gear. It will take a couple days to get her off the feeding pump and onto oral feedings before we can go home. I think it is possible it may be by the weekend though. Who knows really.

She has been more alert each day. A little fussy and whiny, but less and less. She is still not back to her normal self. We are waiting for her to smile still. She plays with toys and rides quietly in the stroller, but no smiles yet. She used to like to make all kinds of lip smacking and kissing noises too. I haven't heard one yet.

She has become very distrustful of anyone who approaches her which is sad. She used to be happy to see anyone - even strangers. Now she just wants to be left alone. She doesn't like people to even listen with the stethoscope or take her temperature. Even right now she is going to sleep for her nap - she has been lying still and quiet with her eyes open in her crib for about a half hour. She is not interested in having me come sooth her to sleep. She just wants to be left alone. Hopefully as we get home she can regain her trust in people and will forget about all the needle pokes and discomfort of this place.

We are in somewhat of a schedule now with our parents both helping to watch Nora in the evenings. Andy has the graveyard shift which is the hardest. He has tried to get sleep during the day at home, but I don't think he has had more than 6 hrs of sleep in the last 10 days. I have been doing the day shift so am able to keep a normal nighttime sleep schedule of 8 hours or so.

Deja Vu to last year - the contractors are showing up at our house today in the middle of this mess. We are getting the entire house painted on the inside. Luckily it is an easier job than our bed/bath remodel that was going on during the NICU stay last year. It should be done by the end of the week instead of taking 8 weeks!

Thanks again for all of your support. It is helpful to have so many people praying for Nora!

First Hurdle Over, Now on to the Next

Yesterday and today Nora slept all day. I mean ALL day. She had to be woken up to eat and just slept right through getting her temp checked and people listening to her through their stethescopes all day. She falls asleep while eating. So, it is back to the NG tube! Just like when she was a tiny baby! The tube give us a way to get her formula. She has switched to higher calorie formula to try to increase the nutrition content. Unfortunately, she is still vomiting though. I would say she keeps some of it down, but probably about half comes back out. I think the next step is to put her on more of a continuous drip of formula rather than slug it all to her little belly at once. I think she may be able to come home once her feeding is stable. Her antibiotics are all oral now, so there may not be a need to stay here.

When she is awake, she is not herself yet. She is reaching for toys and her blanket - so that is good. Her arms and legs seem to be working well. She is a little unstable sitting, but it will come back. She just has a dazed wide-eyed stare and hasn't smiled in days. Hopefully this is the effect of some of the drugs she is on. In the last day she has come off a lot of them though. She is not on any pain meds but Tylenol. She is getting some anti-seizure meds which can make you sleepy. We just have to wait and see.

Surgery complete. Now time to get better.

Yesterday morning Andy work me up with a phone call at 5:45 am saying that Nora's surgery was going to be at 7 am. Ugh. It is a 45 minute drive from our house to the hospital. The nurse got on the phone and said that she would tell them it had to be at 8 since I was not there and it wasn't a good time for her anyway (I bet - shift change is at 7). So, I took a quick shower and managed to get here at 7 am anyway.

15 minutes after I got here they said it was going to be at 11 am. So, we sat and Nora slept pretty much until the surgery. Overall it went good. The Dr took some fluid from her brain, tested it, and the test came back negative for bacteria. They will do a 2 day culture as well which will come back tomorrow. She is all sewed up now with nothing hanging out of her head. Well - except for her IV.

She was generally good yesterday since she had no vomiting - except for coming out of anesthesia. Although she also had no food really, so I am not sure if that is why we had not vomiting or what. Also, there were no "spells." However, she was extremely irritable when awake and drugs didn't seem to help too much which is quite frustrating.

The latest is the nurse just came in and said they want to up her calorie content in her formula and put in a feeding tube. This does not make much sense to me since she is eating fine - it is keeping it down that is a problem. The nurse said that it didn't look like she ate much yesterday. Duh, we had to keep her from eating before the surgery - which we thought was at 7, then 8, then 11 - then after the surgery she was nauseous so we only gave her pedialyte. It is not because she won't eat! So, I haven't discussed it with the doctor yet, but I am going to make them give her a chance to eat the formula by mouth before we give her the tube.

I am reminded of the NICU days in that I am now getting pulled into the drama of the Bronson workplace and getting annoyed with things. Yesterday, the PICU nurse called down to the OR nurse and asked if they could put in a new IV during her surgery. Her old one was getting a little sore and it is quite an ordeal to get one started and much less traumatic for her to do when sedated. When we got down to the pre-op, the transport nurse told the anesthesiologist that the PICU wanted a new IV. He said "Do they want us to clip her nails too?" Ohhh, I knew that wasn't going to end well. Of course, word got out and all the nurses up here have been fuming about it. Plus, the IV that they put in during surgery was no good anyway. They put it in a difficult spot on her left wrist and it was clotted off by the time she got back to the room. This morning Nora got a new IV in her head. Sounds gross, but it is actually better because then her arms and legs are free.

There is also a battle of equipment. When Nora gets moved from her room, to CT, to OR, etc they take along a monitor and cords and stuff. They are very protective of their equipment and there is always a debate over where it goes when she gets back to her room. I don't know why they don't just label the stuff.

Oh well, I hope things start improving so I have the luxury of spending more energy worrying about this petty crap.

Day X -- Ok am not going to count the days in the title anymore.

So what happened today? Let me think. Well, I got here at 7 am. Andy stayed the night last night. He got here in the afternoon after her first "seizure" and didn't go home until this afternoon! Hopefully he is getting some sleep at home now since he is coming to relieve me at 11 pm.


When I got here, Nora was sleeping with Andy in the recliner. Not 30 minutes after I was here, her monitor went off alarming us that her oxygen was dipping. The nurses and doctors sprang into action and got her back into bed and gave her some oxygen. Pretty startling awakening for Andy! It was dark in the room and there was a lot of confusion so it is not really clear that it was a seizure.


Later in the morning she took a nap in my lap. She was scheduled to go down to the OR at 11 to have the CSF in her ventricle sampled. First though, we decided to draw some blood that we needed to test. After a few pokes and quite a bit of protesting, Nora decided she had enough and she started some sort of seizure - like activity again. Another bunch of people came in, got her settled and she fell asleep. Additionally, she started getting a rash as a result of her antibiotic - called Red Man Syndrome. We decided with the PICU doctor that she did not need to go to surgery today since she was having these issues. We postponed it until tomorrow.

That is the last excitement she had today - thankfully. The rest of the afternoon and evening so far she has been sleeping and eating without any drama. The neurologist says he doesn't think that the seizure are actually seizures. They have some characteristics of a seizure, but not all. He just called them "spells." How is that for modern medicine? I thought people had "spells" in old novels. Anyway, he thinks the "spells" are not harmful to her as long as she doesn't get deprived of oxygen - which she won't be in the hospital. He also thinks they will stop when the inflammation in her brain clears. She is taking anti-seizure medicine anyway - just in case.

More tomorrow. Thanks to everyone for your concern.

Day 3 in PICU

Today Nora was sleepy, but seemed a bit more comfortable since she didn't seem to need pain medication in order to sleep. She fell asleep on her own a few times. Her neurosurgeon plans to draw fluid from her brain tomorrow to test to see if the infection is clearing. Since he needs to pull it from inside the ventricle, it will be done in the OR with sedation and the whole works. He will test the fluid immediately to see if there is bacteria, but the full results don't come back for a couple of days (sort of like the days long ago when I used to do "bug counts" at the paper mill!). If the immediate test (called a gram stain) shows no signs of bacteria. If there is bacteria, he will install the ventriculostomy - which she had with the surgery in the first place - so we have easier access to collect more fluid later if needed. If there is no bacteria, then she will just continue with the antibiotics for a couple of weeks and should be better.

Of course, things are always changing though.

This afternoon she had a seizure. This is a first for Nora. We have always been told to expect that she may be at risk for seizures, but she has not had one yet. After the seizure she had an EEG which showed she was no longer having a seizure (which was obvious if you ask me since she was playing with the sock covering her IV hand the whole time). The EEG did look a bit "abnormal" but she has never had an EEG done before, so it is hard to say why it looked like that. I think that if you have ever looked at pictures of Nora's brain (which I have decided not to post on this blog since they are sort of startling), you would be surprised if any sort of normal EEG would come out of it. So, for that reason I am not too shaken by any abnormal EEG. I think that her normal is likely different than most people. She seems to be acting normally now, although still sick and fussy. At any rate, we will now have to get her neurologist pulled back into the mix to sort out the seizure business. She is on some anti-seizure medication now to help prevent it from happening again. Maybe it is just from the infection. Or fever. Or - okay, I will stop speculating and just wait until tomorrow's post to find out more...

Vocabulary Word of the Day: Subdural Empyema

Day 2 in the PICU.

Nora is still resting, getting a lot of IV antibiotics and frequent pain medications. When she wakes it is clear that she is still uncomfortable, so she gets dosed with more pain meds that put her back to sleep. She isn't eating much - or doing much of anything - right now.

She had another CT scan this morning. The neurosurgeon was pleased with how it looked. It appeared that the drain he put in the subdural cavity (area between the brain and skull) removed a lot of the fluid that was building here. Now it is just a question of why there was fluid there. It could be that the infection caused a buildup of fluid in that area, or it could be that by reducing the pressure in the right ventricle, the ventricle has become smaller and the brain is pulling away from the skull, leaving a space that will be filled with fluid. Option 1 is quite serious because it means she has an infection of the CSF which must be carefully treated otherwise there can be really terrible outcomes. Option 2 is also serious since it means she would probably need a shunt surgically installed now to drain the fluid from the subdural area. We will probably not get a real clear answer anyway, so I think that both options will be addressed. The brain is a very sensitive system where pressure changes in any one area affect the whole thing (remember PV=nRT?). So, it is quite complicated. I am thinking I should have paid closer attention in Fluid Dynamics!

We are working on getting a schedule set up assuming we are going to be in this thing for the next while. I really want to have someone here 24 hours with Nora so when she wakes she sees a familiar face. Andy and I probably can't sustain 12 hour shifts for 3 or more weeks straight, so our parents will pick up some shifts to make it easier. Andy will do nights. He doesn't mind it. I stayed here last night and it wasn't too bad, but I have an awful ache in my neck from this recliner I slept in. They have rooms with beds available, but I would prefer to stay in her room so I can be there when she gets woken by the nurse every couple hours.

Anyway, I will be on days and probably be updating the blog once in a while since it can get a little boring. Boring is good though. It means nothing catastrophic is happening. Stay tuned.

Back in the PICU again

Well, we have had a little set back. Nora wasn't feeling so hot yesterday and today she was really not right. Andy and I called the doctor and took her into the hospital. After a couple hours in the ER and some scans and tests, she was back up in the PICU getting ready to have another drain put in her head between her brain and skull. The drain is working now and some fluid that was building up around her head has been removed. Tests of the fluid have shown that she has and infection in the cerebral spinal fluid. She has been getting antibiotics and has been running a little bit of a fever so has been taking some Tylenol.

Tomorrow she will have another CT scan so we can get a better idea of what parts of her brain are inflamed from the infection. Other than that, I think she will just get dosed with these antibiotics for a while until the infection is gone. I suppose if the infection is messing with her ability to properly drain the ventricles, we may be looking at some sort of shunt surgery? Who knows. The neurosurgeon will be back in tomorrow and may have some more to say after the CT tomorrow.

In any event, this will likely be a much longer stay at the hospital than last week. The doctor in the PICU has told us to expect about a 3 week stay. Like old times!

Oh yeah, today is my 33rd birthday. Not quite the party I planned on.

Home Sweet Home

Nora came home on Halloween! All in all her surgery and hospital stay was a success. She is back to herself pretty much. Today we took her to get her stictches removed. She will have a scar on her head, but it should be pretty well concealed by her hair. It is sort of hard to see already since she has brownish hair that disguises the railroad track of stitch marks on her head. Now she just has to step up her therapy a bit to work on her delayed left side. She will get another MRI in a few weeks to check out how her brain is responding to the new path for the spinal fluid that she got in the surgery.

Thanks to everyone for your concern during Nora's surgery!

Almost Home

Just waiting for the neurosurgeon to do his rounds but we expect to be sent home today. Nora is doing well and I think we can say that the surgery was a success. She is pretty much back to normal. Her CT scan showed the pressure relieved in her brain. We are going to have to backtrack a bit with her PT because her left side is now not working as well as her right, but everyone says that it will come back over time with some work. Now we will just have to follow up with MRIs periodically and monitor her head size to make sure the fluid is still escaping properly over time.

It was one year ago at this time that we first found out about Hydrocephalus. In the end of October last year we first met with the genetic counselor and the perinatologist and had them reassure us that everything would be just fine and that these things are so rare that they were sure it would turn out to be nothing. We have been through a lot since then. One thing we know for sure is that these doctors don't have the answers to everything. They are just people trying to do their jobs. We will just have to wait and see what is next...

Out of the PICU

Andy was busy with Nora during the night. She started smiling and acting more normal but still was having trouble keeping down her bottles. Good thing we have that spare security blanket because they have both been the targets of her vomit over the last couple days.

I washed one of them and brought it with me this morning when I arrived at 7 am. Since then things have been pretty smooth. She has been moved to the regular Children's Hospital section where things are quiter and seem more fun. The nurses and staff are all dressed up for Halloween and the Child Life Specialist (I read her nametag for that title) stopped by and gave us a Duckie Halloween costure that will fit over her IV paraphanellia. A Duck is perfect since "Duckie" has been her nickname that Andy and I call her since she was really little.

She was up for a couple of hours, ate, played a bit and did a PT/OT session. So just like home! The therapists were no surprise. She has some delay issues with her left side now. She seems less coordinated with her left hand and leg and is slow to respond. She also doesn't look to the left as must as too the right. It is also affecting her balance so she is a little wobbly when she sits. It is not too bad though. Probably a setback to her PT work, but she will be able to work through it and should be back to full strength in a few months.

After all that she was pretty tired so she is napping now. Grandma and Grandpa Forester stopped by with a nice packed lunch for me which I am finishing now. Thanks! Hopefully she will wake up in time for the Halloween parade at 1 pm. Busy busy!

Day after surgery update

Today Nora had a busy day. She was very sleepy most of the day. She has been on a string of pain medications trying to find just the right combination that makes her comfortable and does not make her sick. When I left her tonight, she was sleeping in her crib pretty soundly so I am hoping she is on the right stuff now.

After her surgery she had a tube sticking out of her head called a ventriculostomy. Today the doctor came an removed the tube and tied up the stitches in the hole in her head. As you would expect, this was not her favorite thing to do.

Overall though, she is handling things well. She is not much of a crier in the first place, so I think the nurses and techs comment about how good she is being, but I know that if she is wimpering she is probably not feeling so hot.

Her left side is still not too active. It is ok since she can move it, but it may take a while. Her brain has gone through some trauma with the surgery, so it will just take time. We will start working on it with her physical therapists once she is out of the hospital. She may have to put her crawling on hold for a bit.

She is in the PICU again tonight. Maybe will move to the regular Children's area tomorrow? I doubt she will come home tomorrow, but maybe on the weekend sometime.

Sorry this post isn't too eloquent or organized. I am pretty tired and going to bed as soon as I hit submit!

Thanks to everyone for their thoughts and prayers. I will update again tomorrow. If you want more frequent updates, get on facebook. I am posting there throughout the day.

Nora's Surgery Day

Nora minutes before her surgery.

Nora's surgery went ok today. It took a little longer than expected and the neurosurgeon was a bit surprised by what he saw in her brain. There was less pressure in the brain than he expected from looking at her MRI's. As a result, the membrane between the two sides of the brain was not as thin and week from being subjected to pressure as he had thought. So, it was a little thicker than normal during this procedure and took longer to cut through. Also, since it was thicker, he had to apply a bit more pressure than normal which tugged on the inside of her brain more than he would have liked. Also, when he got a chance to look around the left ventricle, it was clear to him that the left side of the brain is abnormal as well. We had been somewhat operating under the theory that the right side was not draining properly thereby putting pressure on and squishing the left side. The doctor said that the left side is not just squished, but that the walls of the ventricle appear abnormal. This doesnt really mean anything specific and there isn't really anything we can do about it. It is just "interesting." I guess we are back to the "What To Expect" theme of this blog! It never really goes away!

Her recovery took a little longer than normal as well. Actually, she is still recovering now! In the recovery room she just slept and wasn't moving around much at all. The doctor and anestesologist both examined her and said that they think she is just sleepy and to just wait. She has been sleeping ever since.

She has woke up wimpering a couple times since we have been settled in her room in the PICU and I have called the nurse to up her morphine. Hopefully she will be closer to her old self in the morning.

Tomorrow is the Big Day!

Nora is scheduled for her surgery tomorrow at 9:30 am. She should be at the hospital for a few days, then will recover at home and should be back to herself in a week. I will update the blog after her surgery to let you know how she is doing.

Yesterday she did her first crawl! Well, it is a Nora-style crawl. She lies on her belly, hikes her butt an inch or two off the ground, then scoots herself forward like an inch-worm. Maybe not the most efficient method of communication, but effective. She also has successfully moved herself from sitting to belly without crashing onto the ground. I hope she continues to practice this and gets better soon. It will save her plenty of bumps on the head as she dives headfirst to the floor to get her toys!

Here is a photo of her at Gene's pumkin patch. It was a quick trip as it was cold outside. Her pumpkin is sitting on our front porch now. We also got some squash which I cooked when we got home and Nora loved!

More tomorrow!

9 month photos

Well, 9.5 months at least. I am a couple weeks late.

endoscopic fenestration of the septum pellucidum

Nora is gearing up for her first stay in the hospital since leaving the NICU in January. In a few weeks she will be having brain surgery to allow the CSF (cerebral spinal fluid) in her right ventricle drain into her left ventricle and out of the brain where it is supposed to go. She will be at Bronson in Kalamazoo for a few days for the surgery then will take about a week to recover at home.

We have not yet scheduled the surgery as we are first going to get a second opinion from one of the pediatric neurosurgeons at the U of M. Assuming that they concur with the recommendation of Dr. Warder at Bronson, we will then schedule the surgery.

Although I am not too thrilled about her getting surgery, I am thankful that this procedure even exists. With all of my research, I didn't even know about it until Dr. Warder told us on Friday. This is a much better option than a shunt. There is a likelihood that she will have to have it done again once or twice if her brain heals over the hole that is cut in the septum pellucidum (membrane that separates the two halves of the brain), but that is better than a shunt still. It is also possible that she will end up with a shunt anyway at some point; but this surgery could at least allow us to delay that for a couple of years.

We will keep you updates as I get more news and get the surgery scheduled.

Nora's First September

Nora is 9 months now and at 18.9 lbs and 28 3/4 inches, I think we can say she has caught up after her low birth weight. I was about the same weight at her age and Andy was about the same length. (I was longer and Andy was heavier).

She has been a busy girl the last month with a vacation at Grandma & Grandpa Vought's house while we were relaxing in Mexico and a weekend stay at Grandma & Grandpa Forester's cottage at Houghton Lake.

Here is a recent bathtime playing with Andy. If you are reading this on my facebook feed - you have to go to http://www.noraforester.blogspot.com/ (If anyone knows a solution to this, let me know. I don't want to upload the videos to FB since it takes too long at home and I can't access FB at work.)

Nora is doing really well at her therapies. She is sitting really well now and is working on crawling. She starts Music Therapy soon which should be interesting. I always wondered what those Music Therapy majors were doing with their time in college - I will let you know what I find out.

She will make a visit to the neurosurgeon this week - we have met him before when she was in the NICU. He is going to let us know his opinion on what is going on with her brain. She had an MRI in August that showed some changes from her last scan in December. We will see what he has to say, but my guess is that she will just need to get MRIs occasionally to watch the development of the brain and monitoring for symptoms of pressure on her brain (which she has none now). I am not sure that there is any real surgical option at this point to be considered. Of course, this is just my guess and I should have learned by now to not have any real expectations but just take what comes...

She sits take 2.

17 lbs 14 oz. 28 inches.

8 Months

Nora was 8 months old on 8/10. I would say she has completely caught up from being born small. She is pretty close to average weight and height for her age, which is really good since premature babies can take up to 2 years to catch up.

Her baptism went well. She behaved perfectly in church and gave the congregation a big smile.


She has 2 teeth now. After about 4 months of every one saying "oh, she's teething" every time she fusses a bit, they just popped up without much drama.

The latest development that has us excited is going to sleep. After 8 months or so of being soothed to sleep for every nap and bedtime, she is now going to sleep on her own. She has a good routine of bath, book, bottle, then bed. Then we say "Night, Night," and after a short protest - she is out like a light. Very nice. It is like I have earned an extra hour each evening! What to do with it...treadmill or TV? hmmmm.

Here is another fun video of her laughing. She thinks her new toy fish is HILARIOUS!

Getting Big

First, here is a picture that I said I was going to post a while ago. Nora really likes Buster. She watches him and reaches for him and laughs when she sees him. Buster does not really return her affections. He usually scoots just outside her grasp to avoid losing a chunk of fur to her!

I picked up this new toy at Walgreens near the checkout. She loves it.

Nora gets baptized soon. Checkout the cute invites I made for her baptism. We are having a very small get-together at our house to celebrate her baptism.

August is a busy month for us. Andy is all over the place for work and it looks like I will be too. At the end of the month we are taking a vacation to Mexico. We are lucky to have so many helpers to take turns watching Nora while we are out!

Summer Fun

Nora is nearly 7 months now. She is doing really well and progressing in every area. She can roll now - sometimes/sometimes not. She is still looking like she could sit soon. I can balance her just right and she will stay upright for up to 30 seconds or so. She is HUNGRY! She likes to eat, which must be inherited from her parents. So far her favorites are bananas, sweet potatoes, and cereal. She reaches for toys MUCH more than just a month ago. She is interested in Buster and reaches out for him when he is nearby (which is always - he doesn't want to miss any action). She seems to have better coordination with her fingers too and her left arm - which was really held still by her side for a while there - seem to be getting into the action nearly as much as the right now.



She has started going to swimming lessons with me on Saturday mornings. She is the youngest in the class, but likes the water and watching the other kids. She was kicking in the water last time - although she tends to kick in the air too. She tends to keep her hands in her mouth while she swims - making any real swimming form pretty difficult!



Since I have updated last she has visited her opthamologist and audiologist - both with good reports and orders to come back in a year or so. Her eyes and ears seem structurally a-ok. I guess any concerns would be how her brain will process the inputs. "It will be interesting to see..." the opthamologist said. Whatever.



She is still going to PT, but really just working on normal baby development stuff (tummy time, trunk strengthening, reaching, sitting, etc.). She does have a tendency to arch her back and stiffen out her legs when she is being held or in a sitting position. It gives the appearance that she would like to stand. People seem to get a kick out of that. From what I read, this is a pretty typical behavior of children with CP.



This month is pretty low-key for her. She has a neurologist appointment this week, her usual PT sessions, and one visit from her teacher (they take a summer break - but come out just once in July). Hopefully she can get some outdoor playtime in. Andy bought her a little blow up house that gives her a shaded area to play in. She has been out there a few times to play and seems to enjoy it. I will have to post a picture of it soon, it is pretty funny.



Last Friday we had my dad's 60th birthday party at our house. Andy made ribs and we had a nice time. Nora got to meet some of her aunts and uncles for the first time - although not for very long since she seems to pretty strictly adhere to her bedtime of 7 pm. Here is a picture my Aunt Camilla took and sent to me. She gave Nora several cute books which she likes to read.

Nora's 6 Month Pictures

I braved the JCPenney Photo Studio chaos once again:

May 2009 Videos

It takes me longer to post the videos because of my slow internet connection at home. Here are a couple from May:

Playtime video:

Nora's first meal:

May 2009 Photos

Time to post some new pictures! These were all taken during May.


Here is Nora practicing her "tummy time" with Dad on the ball.






Nora is always on the go. Here is one of her many car rides. Compare her picture to the first ones in the car seat. She is so much bigger!

This is Nora's first time eating "solid" foods (it is pretty soupy actually). She seemed to spend more time staring at her crazy parents as we made all kinds of funny noises and shoveled the rice cereal at her.




Grandma Forester made her his bowl in ceramics class.

Here is a video of the first meal:

Back to Work!

I haven't given a general update for a while since we have been pretty busy this month. I returned to work full time this month. It is going well so far. It is tough to get up so early in the morning and feels a little rushed in the evenings when I get home, but it is working out. Nora has a very nice nanny who comes to our home each day to watch her. She is lucky to have her.



"How is Nora doing?" Now that I am back to work this is the question I am asked by everyone. At first, I felt like I didn't really know how to answer this. Seems like a simple question, but I was struggling with what to say. It seems like so much has happened since the last time I talked to some of these people. Fine seems too brief. A detailed description of every milestone and issue seems like too much. I called a client the other day, a nice guy, but I don't know him too well - strictly business. I told him I was back from maternity leave and apologized for leaving without wrapping up a project that I was working on with him when I left to have the baby. He was of course understanding, asked if I had a boy or a girl, and said, "I presume everything turned out ok then?" I just answer, "Oh yes, she is great." And the conversation moves on. I mean, what do you say? She is. I am now convinced that I am just overthinking what should be a very simple question. People are just inquiring. They want to know that things are good.



And they are. So, "She is doing well" has become my answer. What does this mean? Well, it means that she is gaining weight very well (nearly 15 lbs now!), she sleeps well (about 10-11 hours at night - most of the time), she smiles, she plays, she is starting to roll, she has good head control and is showing signs of being able to sit, she is interested in her surroundings and mom and dad, she crys when she is cold, hungary, or tired, she laughs - but you have to do something REALLY funny, she travels well, she is not afraid of strangers, she wakes in the morning and waits patiently to be fed, she likes her bathtime - but does not like to be cold, she likes to have her diaper and outfits changed, she does not like it when the dog barks, she is learning new skills every week, she has not been sick at all, she has not had any seizures.



"So, glad to hear that it all turned out ok." Not sure what to say to this either. Yes, it is all ok. She is great (as listed above). We are very lucky that she is doing so well. But the effects of her chromosome disorder and brain malformation are still a huge unknown. So far she is making improvements and changing every week; but she is a little behind her baby peers at this point. At 6 months, she has generally mastered most skills through a 3 month level according to her therapists. (Not that this matters much. I do look at the developmental timelines they give us because it is a good chronology of skills and what she will be practicing next, but I have started to ignore the x-axis that shows the age.) She goes to PT once a week. She has a Special Education teacher 2x's per month and additional PT and OT once per month. She has been examined by a geneticist, an orthopaedic surgeon, a neurologist and her pediatrician. She has appointments to visit the opthamologist and audiologist soon. And this is all "ok."



Anyway, this whole experience has definitely made me think a little more about the simple question, "How are you?"

She Rolls! (almost)

She somewhat rolls. Gets her legs going and swings them over to the side, just needs to get her arms involved and she will be all set!

She Laughs!

She has been giggling for a while, but these are the first real laughs.

Nora at Chuck E Cheese

A little young, but she seemed to enjoy the lights and music.



We went with some of our friends.

4 Months today!

Today Nora had her 4 month pediatrician appointment where she got 2 more shots. Ouch!

She weighs 11 lbs 10 oz.

I took her to JCPenney last week for some photos. Here are some good ones: