Wednesday, April 28, 2010

Afternoon at the Zoo!

On Monday we decided it would be fun to go to the zoo!

It was Brogan's first time, and he was a HUGE fan from the moment he spotted the first bird!

He quite seriously probably could have stayed and laughed at that bird for hours if I hadn't forced him to come and see the goats!
Trying to get the goats to come and say hello to him :)

Avery pointing out the snow leopard resting on a rock.

Brogan showing Daddy the red panda.

We brought Avery's friend Kayla with us, and I think everybody was very happy with that last minute decision :)

The Aviary! This wasn't there last time we went to the zoo, and it was a hit! They absolutely loved being able to see the pretty birds without a cage in the way :)

Kayla was very helpful with Brogan :) When Gabe went of to park the van when we first got there, she obediently held Brogan's had so he wouldn't go running off, and Brogan in return absolutely adored her for giving him the attention! He kept on trying to hold her hand after that :)

You can see from the way he's walking how happy he is! He's at the zoo, he's got his squeaky shoes, and a big girl is holding his hand - does life get any better than this???

I don't think the cougar appreciate our visit very much....

...and this might be why....

This little playground wasn't there last time we visited the zoo either!

Brogan really loved Kayla :)

Then it started raining so we took shelter in the reptile house! Brogan loved the big yellow snake!

And Avery wasn't afraid of them! The first time we took her to the zoo she was probably about 18 months old, and she wouldn't go anywhere near those giant snakes! I remember I was holding her when we walked around the corner, and as soon as she saw them she started squirming and whining, and didn't calm down until she couldn't see them anymore! This time around she found them very interesting :)
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Thursday, April 22, 2010

It's a......


We are so excited :) I couldn't decide what I wanted to have, but now that I know it's a boy I am absolutely thrilled!!!! And he looks perfectly healthy - normal ventricles and normal everything else! And I was a little concerned because last time they told me that the placenta was at the front, so I was worried it might be in contact with scar tissue from my c-sections, but apparently it's a good couple of inches away from that, so hooray! One less complication :) It also explains why I haven't been feeling him move quite as much as I felt the others, because the location of the placenta is like a big cushion between him and my vital organs :D And there I was thinking it was because I'm fatter this time around!! :D And it's certainly not because he's not moving - he was a real little wiggler during the whole sonogram! So cute :)
Anyway, Avery was excited too, and Brogan just wanted to go play in the hallway :) I am so excited!
Oh, and by the way....that means that 69% of you were wrong! hehe

Wednesday, April 21, 2010

One more day!

Wow, a lot of you seem to think we're going to have a girl! And Avery agrees with you! Right from the beginning she has said that she would like to have a girl baby. Over breakfast this morning I was telling Avery that tomorrow we are going to go see the baby doctor, and hopefully we will be able to find out whether we're having a girl or a boy. She got so excited, and told me that yesterday she was talking to her teacher and told her that we were having a girl baby and a boy baby, and wouldn't that be great?!!! I said that I would love that too, but we're just going to have to see what Heavenly Father wants to give us, and that it looks like we're only having one baby, and we don't know whether it's a boy or a girl yet. She said "Mom...I want a girl baby." So, we'll see!! I can't wait! I don't really think that Avery will be disappointed if it's a boy though :)
In other news, we have purchased tickets for our trip to England! Last time I went home was almost exactly 4 years ago when Avery was 3 months old! My little brother got married and we got to go to the wedding, it was lovely! Avery and I got to stay for 6 weeks. But it was a long time ago! I am so excited to go back! When I first told my mother I was pregnant she tried to convince me that it would be better to wait until after the baby was born, because it wouldn't be as much fun when I was pregnant, but I completely disagree. Our last trip was a lot of fun, but I was quite limited in what I could do because I was working around a breastfeeding, multiple nap-taking infant. This time I will obviously be a little rotund, but I can cope with that :) I am excited! I'm not so excited about flying overnight with 2 little ones by myself (Gabe flies out later)...but we'll survive that part and it will be great :)

Friday, April 16, 2010

A boy and some paint

The other day I pulled out some paint, paper and a paintbrush for Brogan to play with....

He had a blast! We started out using our hands and fingers, and got a couple of good handprints, and he was so happy to be able to play and make mess without getting into trouble for it!!

Brogan's shocked face as he realises just how much paint he has all over his hands :)

Uh oh....then he decided to see what it tasted like....

So we cleaned his hands and moved onto the paintbrush...
Luckily that was fun too :)

P.S. Don't forget to vote in the baby gender poll on my sidebar! My appointment is next Thursday, and I am SO IMPATIENT to find out this time!!!
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Tuesday, April 13, 2010

(Late) Easter egg hunt

Since Avery and I were at the hospital over the Easter weekend and then all of us were sick, we decided to postpone the hunt for chocolate until the following Sunday, which actually worked out great because it meant I got all of our candy for 50% off :) And Sunday afternoon was absolutely beautiful! Sunny and warm! In fact, a little too warm! A lot of the chocolate was a little bit melty by the time it was found....! But nobody seemed to mind :)
Avery used her shopping cart to explore the garden. The wagon was for Brogan, but he wanted Avery's cart, so there was a little bit of unhappiness at first!!

But then the first colourful eggs were found and they were filled with chocolatey goodness, and everyone was friends again!

Discovering eggs :)

After Brogan found his first egg and realised it had chocolate in it, he wasn't really interested in finding anymore!!
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But he was happy to follow Avery around and watch as she found the rest of the eggs and treats :)

Pretty girl in a pretty dress :)
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School meeting

This morning Avery and I had a meeting with Avery's teacher and the school nurse and principal. It went well, and I think it was pretty informative for them. I decided beforehand that we didn't really need to go into who's to blame for the issues we had over how the whole incident was handled - we'd already been through that and I had received a lot of apologies from everyone involved. But after hearing the teacher say that the nurse told her that shunt problems would be evident immediately, I knew that I needed to talk to them about Avery's shunt and conditions, since that little nugget was entirely untrue. Although to be fair, after Avery's teacher had left, the nurse made a point of letting me know that the teacher had misunderstood her, because she knows that symptoms of shunt problems can take hours or days to show up and would never say otherwise.
Anyway, I went through Avery's list of diagnoses, which was good because they didn't have half of them on her records. I had printed out two copies of the following information I had typed out - a copy for the nurse and a copy for the classroom. (I just copied and pasted the document, so the images haven't copied, and I'm too tired to do anything about it...sorry)

Avery’s diagnoses:

  • Congenital Hydrocephalus
  • Dandy Walker
  • Spastic Diplegic Cerebral Palsy
  • Periventricular Leukomalacia
  • Absence of the Septum Pellucidum
  • Hypogenesis of the Posterior Corpus Callosum
  • Optic Nerve Hypoplasia
  • Septo-optic Dysplasia
  • Sixth Nerve Palsy

Avery’s shunt was placed at 2 days of age. She has managed to avoid any revisions so far. Her current shunt is a Strata II programmable shunt. Its mechanism is adjusted using a powerful magnetic device, and while ordinary magnets should in theory not pose a problem, it is best if she stays away from large or powerful magnets. Magnets of any size should not be placed near her shunt. She has had at least two issues in the past where the shunt’s setting changed inexplicably.

Medtronic Strata II valve.

The PS Medical® Strata® valve is an adjustable flow control valve in which the resistance properties of the valve can be changed non-invasively by the caregiver. It is designed to minimize overdrainage of cerebrospinal fluid (CSF) and maintain intraventricular pressure (IVP) within a normal physiologic range, regardless of patient position. The normally closed Delta® chamber mechanism opens in response to positive ventricular pressure. Working with the ball and spring valve mechanism, overdrainage is minimized by utilizing the principle of hydrodynamic leverage.

Please familiarize yourself with where Avery’s shunt is and the path it takes to her abdomen.

What are the symptoms of shunt malfunction ?

One or some of these are:

  • persistent headache
  • vomiting without diarrhea
  • double vision
  • irritability
  • tiredness
  • fits

Children and adults may experience headaches, vomiting, irritability and tiredness. Swelling along the shunt tract occurs less frequently. In the event of an abrupt malfunction, a child may develop symptoms very rapidly, in a matter of hours or days. Without treatment, coma, and even death, may result.

Older children and young adults may also become increasingly tired, have difficulty waking up and staying awake, experience personality changes and, unless treated promptly, may go into a coma.

Also watch for symptoms like unusual vomiting, irritability, sleepiness and decreased interest in eating.

Shunt malfunction is usually a problem with a partial or complete blockage of the shunt. The fluid backs up from the site of the obstruction and, if the blockage is not corrected, almost always results in recurrent symptoms of hydrocephalus. Shunt obstruction can occur in any part of the shunt. Most commonly in children, the ventricular catheter (the one in the brain) becomes obstructed by tissue from the choroid plexus or ventricles. In adults it is more often the distal catheter (the one that drains the fluid to another part of the body) that becomes blocked. The catheters or the valve may become blocked with blood cells or bacteria. Shunts are very durable, but the components of the shunt can become disengaged or fractured as a result of wear or as a child grows, and occasionally they move from where they originally were placed. More rarely, a valve will fail because of mechanical malfunction.

Shunt infection usually is caused by a person’s own bacterial organisms; it is not acquired from exposure to other children or adults who are ill. The most common organism to produce infection is Staphylococcus Epidermidis, which is normally found on the surface of the person's skin and in the sweat glands and hair follicles deep within the skin. Infections of this type are most likely to occur one to three months after surgery but may occur up to six months after the placement of a shunt. People with ventriculo-peritoneal (VP) shunts are at risk of developing a shunt infection secondary to abdominal infection, whereas people with ventriculo-atrial (VA) shunts may develop generalized infection, which can quickly become serious. In either case, the shunt infection must be treated immediately to avoid life-threatening illness or possible brain damage.

Other Shunt Complications may include the shunt system draining fluid at the wrong rate. Overdrainage of the ventricles can cause the ventricle to decrease in size to the point where the brain and its meninges pull away from the skull or the ventricles become like slits. If blood from broken vessels in the meninges becomes trapped between the brain and skull, resulting in a subdural hematoma, further surgery is required. This is most common in older adults with normal pressure hydrocephalus (NPH). Slit-like ventricles, sometimes called slit-ventricle syndrome (SVS), are most commonly a problem in young adults who have been shunted since childhood. Underdrainage of the ventricles can fail to relieve the symptoms of hydrocephalus. To restore a balanced flow of CSF it may be necessary to place a new shunt containing a more appropriate pressure valve. For those who have externally adjustable or programmable valves, the balance of flow can often be restored by re-setting the opening pressure.

SHUNT MALFUNCTION OR FLOW ISSUES WILL PROBABLY NOT BE EVIDENT IMMEDIATELY AFTER AN INJURY. IT COULD BE HOURS OR DAYS BEFORE SYMPTOMS OCCUR, WHICH IS WHY I SHOULD ALWAYS BE CONTACTED IF AVERY RECEIVES ANY KIND OF BLOW TO HER HEAD. Since she has suffered serious brain injury, and her health and well-being rely on the normal functioning of a sensitive medical device, she is also going to be significantly more sensitive to head injuries than other children, and a some ice and a quick once over is not sufficient.

Avery at 2 months, 2 days. Exactly 2 months after shunt was placed.

2 years after shunt placement.

I also gave them copies of two leaflets we got from Medtronics (the company that makes Avery's valve) with information about her shunt and symptoms of malfunction, obstruction, infection, overdrainage, etc.
They all seemed very surprised that we would know so much about all this medical stuff, because some parents don't seem to educate themselves about the various medical conditions their children live with. I have met some. I met the mother of a little girl who had hydrocephalus in the neurosurgeon's office a couple of years ago, and she didn't know where the shunt was or what kind it was, and it surprised me. We have had too much experience with doctors to trust them to remember everything or catch everything. Our children need their parents to be on top of all of that!
Anyway, it was a good meeting, and I feel better about sending Avery back to school. Especially since she was so excited to go back yesterday!

Monday, April 05, 2010

Home again

Avery and I got home yesterday afternoon :) Avery's fever broke sometime during Saturday night and she was finally able to get some fairly decent sleep, besides the weird sleep talking and hallucinating, and having to get up to use the bathroom about 5 times because they had pumped her so full of fluids! And for the first time since we'd got there her heart rate dropped to a nice restful 100 bpm or so, which was nice to see after it had not dropped below 135 before that, even when she was sleeping, and when she was awake it was more like 150-160.
She developed an ear infection on Saturday, but since they had given her a round of IV antibiotics for the fake pneumonia on Friday night, the ear infection seems to have cleared up pretty quickly.
We're still not entirely sure why she spent all of Wednesday throwing up with a high fever and severe headache, since the cough and congestion didn't show up for another 48 hours, but it's possible that she had a bit of concussion, or possibly a migraine as a result of the beating she received at school on Tuesday. The neurosurgeon said that he doesn't think it's likely that the kicking itself caused the smaller-than-expected ventricles, especially since the shunt itself seemed to be in good shape. It's possible that the respiratory infection itself could be the culprit, or it could be that her shunt is over-draining a little bit again, so we'll be going back up to UVa in 3 or 4 weeks so that they can do another MRI and decide whether the setting needs to be changed. Her shunt has been set at 2.0 since last June, and it only goes to 2.5 (the settings go up in .5 increments from 0 to 2.5, so she's at the second slowest setting right now), so if they have to slow down the flow any more after that then she'll need a different shunt. But we'll see what they say in a month.
Anyway, Avery is feeling so much better! When we got home last night she even got down and played on the floor with Brogan, which was nice to see since she hadn't even sat up voluntarily since she started throwing up on Wednesday morning. However, now Gabe and I are both sick. So Gabe is home from work today, and we're all feeling a little sorry for ourselves! But things could certainly be a lot worse, so we're happy :)

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Saturday, April 03, 2010

quick update

this will be really quick because writing on my palm pilot is a pain.
i brought avery up to the hospital at uva last night because she still wasnt any better and there were too many similarities to when her shunt was having issues last year.
long story short they thought she had pneumonia and gave her iv antibiotics but now say she doesnt have it afterall. but she has developed quite a cough since being here and theyre treating her for dehydration. neurosurgery say that the shunt appears to be fine in the shunt series xrays which is good. mri shows that her ventricles are a little smaller than they were expecting to see so once the infection is sorted out they want to make sure theres no overdraining or anything else going on.
now im going because that hurt my hand.