Tuesday, November 29, 2011

11 months old!

Yesterday Madi turned 11 months old!  I know that I say this every single month......but, where has the time gone!?!?  It seems like she should only be a couple of months old.  It seems like just yesterday, we were setting up the Christmas decorations (last year) and I was large and in charge......wondering when this baby was going to make it's debut!

Madi is doing some wonderful things these days!  First off, even though she spent a week in the hospital with pneumonia......I think it actually did her some good.  She came out of there with a renewed sense of energy and is doing some things that we have been working on for months!

Preview of her first birthday outfit!

First off, she is crazy mobile!  She still is only doing the army crawl but she is moving non-stop!  If you are sitting next to her, she will lunge at you and try to climb up onto  your lap!  Her army crawl is still only a very short distance but she quickly recovers and is searching for the next thing to try and get.  Her latest thing she loves to do is try and get the items and small toys that I conveniently hide underneath the ottomon.  I purposely put some of these things to stay out of her reach.  Well, not anymore, they are fair game to her!

About 2 1/2 weeks ago, she decided all on one day that she was going to pull herself to stand from a sitting on a box position.  And she decided to wave to us.  She did both of them for the first time in a matter of 5 minutes.  It was awesome!!  We were so shocked by the pulling to stand that we didn't even have a chance to recover before she waved at us!

Another amazing thing Madi did for the first time the other day........she sipped out of the straw!  We have been working on this for about 3 months now and have been getting super frustrated.  We were using a combination of the Take N Toss and HoneyBear cups but neither of them were working.  We tried using different fluids, different consistencies, different temperatures, different flavors......basically, different everything to try and spur her on.  Well, out of the blue, she sucked!  And then she did it again!  She is only taking a few sucks at a time, so she really isn't drinking anything more than 1/2 oz. at a sitting.  But, it is a start!  I am so excited and proud of her!

Another great development in the eating area.......she is full-on finger food eating!  She LOVES, LOVES, LOVES toast!  She would eat it all day long!  She also is eating scrambled eggs, green beans, chicken, sweet potato fries, strawberries, tater tot casserole, and she even ate a couple of black beans at dinner tonight.  She has been able to "rake" the food with her hands for awhile but she couldn't figure out how to open up her palm to stick the food in her mouth.  Again, just like everything else, all of a sudden one day she could do it!

With all this super proud momma bragging......I have to throw in a down side we are experiencing right now.  As you can see from all the pictures, her mouth is hanging open and her tongue is sticking out........well, she is sick, yet again.  Really, I don't know if she has ever gotten better for more than a day or so before the next round hits.  She basically has been congested and snotty nose for 2 months now.  I feel so bad for her.  She isn't sleeping the best at night and I know that she is tired of me wiping and sucking the snot out of her nose.  She starts to cringe anytime she sees the bulb syringe even coming near her.

I know that alot of it has to do with her nasal passages being very small due to the Ds and unfortunately, she has a very weak immune system.  So, the slightest little bug seems to throw her over the edge.  I hope this is not an indication of how our winter's are always going to be.  Hopefully she will grow out of this a little bit as she gets older.

We are super excited about the amazing things our baby girl is doing these days!  Only 1 more month until her birthday!!!!

Sunday, November 27, 2011

Thanksgiving and traditions

I hope everyone had a wonderful Thanksgiving this year!  From the looks of all the pictures and stories on the other blogs I follow......it looks like it was fabulous!

Our Thanksgiving was the lowest key it has ever been.  Mark is out of town flying (he left Tuesday, won't be back until Monday) so it was the girls, my parents and I.  We decided it is entirely way too much work to cook all that food, just for the three of us adults.  So, we went out to eat.

I haven't really decided how I feel about that decision, yet.  It was great, in the sense that there was no stress and no mess to clean up.  But, I definitely missed having a bunch of people around to celebrate.  I come from a very loud family.....everyone shouts over each other and is always trying to get the last word in.  And, you know, I LOVE THAT!!  I love the commotion, the craziness, loudness you can hear from a block away, the drama that always seems to happen.  It's what makes our family.......Our Family.

Madi is thinking, "I want to grab your hair, Taylor!"

"Oh, that flower looks much better!"

"I got it!"

It is so hard to get a good picture of the girls together these days.  One of them is always doing something silly or is distracted.  And for Madi, these last few weeks she is so congested and she can't breathe out of her nose.  So, the result is her mouth hanging open, more so than usual.

Seriously, who took my little girl and replaced her with this BIG GIRL!?!?  She looks sooooo grown up!

At least I am looking forward with this one.  We took 6 pictures of the three of us......every one of them had something funky about it.  Oh well!

We are at the beginning of my FAVORITE time of year.......Christmas!!!  I have so many memories and traditions that I loved from growing up that are around the holiday season.

When I was growing up, we lived in Montana....our tradition the weekend after Thanksgiving was to drive into the mountains and score through the thousands of trees and chop down our Christmas tree.  We would always bring leftover turkey and make sandwiches, hot chocolate and cookies.  And every year we would chop down this tree that looked to be the perfect size.....that was until we got it home.  It always was too big and my dad would have to cut off several branches on the bottom to make it fit.  It was the classic Griswold situation!

I used to love how the tree smelled up the house, with that fresh mountain pine smell!  And there was nothing like cutting down a fresh tree yourself.  Not these ones you get at the stands on the side of the road.  One year, one of our trees we had cut, actually started to grow!  Yes, it grew inside the house after we had chopped it down!  It had little new buds on the tips of the branches!  It was crazy!

Unfortunately, I will not be able to give my girls that memory this year.  But, when Mark gets home, I can. not. wait. to go and get a tree and get it set up.  We have a front entryway that has tall vaulted ceilings so every year we get a 12 foot tree to fill it up!  It is amazing!!

I look forward to hearing about everyone else's traditions this year through reading of the blogs!

Wednesday, November 23, 2011

It's never too late: Halloween! ~ Camera ~ Cat injury

Since Madi was in the hospital over Halloween.....I never had a chance to take pictures of the girl's in their Halloween costumes.  You saw a glimpse of the outfits from the School party at Taylor's school but I didn't get any at home.  Taylor did go trick or treating with my dad and for a short while with Mark (while he took a break from the hospital) but, unfortunately, Madi never experienced her "First Halloween".     :(

So, I decided we would get their costumes on and take a few photos.......

I am sure you noticed the snotty nose on Madi and the black circles on Taylor eyes.......yes, Madi is sick, yet again.  I have come to the conclusion that this is how Madi is going to be for the entire winter.  Snotty nose, congestion, and coughing.  In regards to Taylor's black circles, she hasn't been sleeping the best since her T&A, wakes up in pain and crying.

Here are some more cute pictures.....

It makes me sad that Madi missed out on her "First Halloween" but in reality, she doesn't know the difference.  She will have plenty of more Halloween's to celebrate!


On another note, I have a new camera!!!  Yeah!  Now I have to learn how to use it.  It is definitely not a point and shoot type of thing, that's for sure!  But, so far, I am loving it!  I got a Nikon 5100, for those of you that are camera buffs.


In the midst of Taylor getting her tonsils out and Madi getting sick, yet again, we had another "drama" happen in our household.  Remember, the name of our blog is Johannsen's Crazy Life........so, we are sure to always have some kind of "drama" happening!

On the night of Taylor's surgery, Mark returned from the hospital with Madi to discover that one of our three cats had puss oozing out of his neck.  We had noticed the day before that he had gotten into a little "scuffle" with one of the other cats but this has happened before and it heals, no big deal.  Well, this time it got infected.  Mark had to take him to the emergency vet hospital in town because, of course, these types of things always seem to happen when your regular vet's office is closed.  This is the result for the next couple of weeks......

He has a section of the back of his neck, about 2 in. wide by 1 in., where the skin has died.  It has scabbed over but until the skin and scab flake off and heals, he has to wear this protective "sock" so that he doesn't scratch at it.

I feel so bad for the guy but in a way I don't too.  He really is the bully out of the 3 cats and I know that he instigated this.  Whenever he gets bored, he decides to pick on the other two.  Well, Celeste (our female cat) decided that she had HAD enough!  And she gave him a little dose of his own medicine!

Poor Kosmo!

I hope everyone is having a safe and happy Thanksgiving holiday!

I promise, I will be posting more these upcoming days!  :)

Wednesday, November 16, 2011

T & A Complete!

Taylor's tonsillectomy and adenoidectomy are complete!!!  She had the surgery yesterday and after a long night last night.......we are home!!!

The surgery was scheduled for 7:30 am, so we were told to be there at 5:30am.  It was a early morning!  On Monday night, the anesthesiologist called to discuss her surgery and asked the standard family history questions.  Well, when I told her that a cousin of mine had a adverse reaction (called Malignant Hyperthermia) to anesthesia, she didn't seem too concerned because I have had several surgeries and never had any sort of reaction.  Malignant Hyperthermia, also known as MH, is a genetic condition that causes a fast rise in body temperature and severe muscle contractions when a person goes under general anesthesia.  Their body usually starts to shut down and they go into cardiac arrest.

The next morning when we showed up, though, it was a different story.  The anesthesiologist must have done a little research and they decided  that even though I have never experienced MH in my surgeries, it doesn't mean I am not a carrier for it.  MH usually gets triggered by certain anesthetic drugs, particularly being the "gas" ones they use on children to start the process of putting them under.

The original anesthesiologist decided she was not comfortable doing the surgery and she wanted us to have a someone that specializes in MH patients.  So, we waited for a while to find out whether they could find someone on short notice or whether we would have to reschedule the surgery.  Luckily, they found a specialist at Children's Hospital.......someone who does lectures and teaches others about MH.  So, needless  to say, she was good at what she does.

Someone who has MH in their history can have surgery......just not the "gas" and not certain drugs.  With Taylor, they had to give her a drug that she drank to make her a little loopy.  Then, they gave her an IV, while she was awake, before she could get the "sleepy" drugs.  I was a little nervous about them giving her an IV while she was awake but she was so out of it that she didn't know what was going on.  Actually, she sat and watched the whole thing.  I was trying to distract her but she insisted upon watching it.

Once Taylor finally got into the surgery, everything went smooth and routine!  The ENT said that it was a good thing we had her tonsils removed.  They were so big that they were starting to "snake" down her throat.  That is crazy!!

The first thing Taylor said when she was in recovery was, "Where is my giraffe?"  Well, we had to bribe her that she could get this giraffe we saw in the gift shop if she drank the medicine to relax her.  You would think that she would have forgotten about it........Oh No!  Not Miss Taylor!  She has the memory of a steel trap!  That was the first thing she wanted, even though she could barely hold her head up.  So, Gigi went and bought the giraffe as a "Get Well" gift!

Taylor is doing better than I could have imagined!  I was expecting a whole lot worse, I guess.  The night of her surgery, she ate a big ole' bowl of mac n cheese, yogurt and ice cream!  I was surprised to see her appetite in full force!  I think the tough part of the recovery is going to be keeping her from running around and making her stay a little more mellow than usual.  I am hoping that she continues to have a smooth recovery.......I have heard that around day 7, when the scabs start to fall off, that the pain can be bad again.

Here's to praying that Miss Taylor continues to do well!!!

Friday, November 11, 2011

Tonsils and Camera Searching

I know that I have been very vacant these last couple of weeks.  With Madi being in the hospital for 7 days straight, I am left this week trying to catch up on all the every day things that we missed doing during her hospital stay.  

In addition to the things that we missed, I am also trying to get ahead because next Tuesday, Taylor is getting her tonsils removed.  So, back to the hospital I will go.  This time with Taylor.  They consider the surgery to be outpatient with a 23 hr. 59 min. observation afterwards.  So, we will be staying the night.

I'm sure you are probably asking, why is she getting her tonsils removed?

Well, first off, she snores worse than a drunken sailor!  Not all nights.....but alot of nights.  I have gone in her room to check on her and have witnessed her "stop" breathing for a few seconds.  They don't need a sleep study done to determine that she has sleep apnea.  She doesn't really sleep very well.  Her snoring and snorting wakes her up, which then she often lays there for an hour or more before she goes back to sleep.  She is almost 3 1/2 years old and most days, by noon, she is exhausted.  

When she is exhausted like that, her attention span isn't the greatest.  And she gets very whiney.  So......hopefully all of this will improve when her tonsils and adenoids are removed.

I guess tonsils are rated from 1 to 4, according to size.  Well, the ENT determined that Taylor's are 4+.  He called them "kissing tonsils".  

I am feeling pretty calm right now, when I think about the surgery.  But, I know that in a couple of days, I will be a nervous wreck!!!  I don't want them to put my girlie under anesthesia!!!  What keeps me fairly sane about the whole procedure is the fact that I know that it is so routine and common.  And really, what should I be complaining about.........there are many of you out there reading this that have had your baby have open heart surgery at only a few months of age!  I can't even imagine!  I admire, these parents, for their courage and strength ........for I can only imagine the fear they felt inside.  

~ ~ ~ ~ ~ ~ ~ ~ ~ 
My camera died.......we have had it for over 7 years so I guess I should be happy it lasted that long.  It was just a small camera, Canon Powershot.  So, that is why there is also a lack of photos the last few weeks too.  

We are going to take the plunge into the world of DSLR cameras!  I am trying to do a little research on which one to buy........so for all of you out there that take these AMAZING photos that I am so jealous of........which camera and lenses do you have and why?  I need some advice on this.
Here are a couple of photos I took a few weeks ago before my camera died.........

Saturday, November 5, 2011

We are home!

This is going to be very brief, as I am extremely exhausted.  But, we are HOME!!!!  Yeah!!

Our 7 day journey in the hospital with Madi is finally over!  We got home a few hours ago and I have never been more thankful.  I feel like I was gone for a year!

All I had with me during that time was my phone....the hubby had the laptop with him at work.  So, I feel so disconnected right now with the world.  I missed out on the last few days of the 31 for 21.....I missed out on Halloween.....I haven't read a blog all week......you can only do so much when you are working with the internet on your phone.  Especially my phone.  I don't have an Iphone or anything else like that.

Thank you to everyone that was thinking about us and saying prayers!  Your thoughts mean the world to me!!  And they must have worked........because we are HOME!!

Thursday, November 3, 2011

Still in the hospital.....

We are still in the hospital with Madi.  :(

As I told you from my previous post, they want her to be off oxygen while she is awake.  Well, yesterday was a GREAT day!  She was off her oxygen and her o2 levels were around the mid-90's.  We wanted to have her stay one more night to do some room air challenges while she was sleeping.  The whole point of that was to find out how low she would go if her nasal cannula came out of her nose during the night at home.

Last night went good.  She dipped down to around the mid-80's during her room air challenge while sleeping.  That was reassuring to know that she wasn't going to drop into the 70's if I didn't notice her oxygen was off her during the night.

This morning......the down turn started again.  Took her off of oxygen, she immediately dropped to mid-80's.  We put it back on her but what started to concern us was the level she needed to be at during her nap.  She had been at 1/8 of a liter during sleeping the last day and a half but now she needed to be bumped up to 1/4 of a liter.  And when she was awake, the 1/8 of a liter was barely holding her at 90%. 

When the doctor came in, she noticed quite a bit of change in the way her lungs sounded from the day before.  And, of course, it was for the worse.  She ordered another chest x-ray to see if there had been any change.  When the results came back, she was pretty surprised.  Her lungs were significantly worse. 

Instead of the amoxycillin Madi was taking, now she is receiving strong antibiotics through an IV.  Hopefully these will take effect right away!

So, it's looking like we will be in the hospital for a few more days. 

I will try and keep everyone posted as well as I can.  I don't have a laptop with me at the hospital so I can only update when I come home to get more stuff to bring back to the hospital.

Tuesday, November 1, 2011

In the hospital

I missed the last 3 days of the 31 for 21 Down syndrome Awareness.......

.....but, I have a good excuse.  Poor little Madi is in the hospital.

Starting on Thursday last week, Madi started acting very fussy and had a low grade fever.  She was chomping on stuff pretty hard so we thought she was probably teething.  You can feel a couple of tooth buds that are just waiting to sprout up out of those gums.

Saturday, the fussiness started to become a little more severe......not like she was teething.  But, she didn't have any other symptoms.  Until that night.....

Saturday was a very restless night.  She was congested, coughing and just moaning.

Sunday morning, her fever was a little more than low grade.....101.4.  After her morning nap, she woke up with a 104.4 fever.  For Madi, this is pretty severe.  She generally runs a little on the cooler side, around 97, so 104 is HOT!  We called her pediatrician and he suggested that we head to the ER, thinking that she might have pneumonia.  Well, sure enough, after a chest xray, she has pneumonia.  They gave us some antibiotics and sent us on our way.

Well, when they say, "Trust your mama instinct"........they mean it!  Trust your mama instinct!  I just felt like we shouldn't have left the hospital but I felt like we were kind of rushed out of there.  Madi is normally on oxygen at night but it is a very low amount.........1/32 of a liter.  They had us increase her oxygen at the hospital to 1/8 and told us to have it on her full time.  When we got home that afternoon, Madi was exhausted and she took a 3 1/2 hr nap.  When she woke up, she was on "fire" and very gray.  We have a pulse oximeter at home.....it said she was at 82%.  82%?!?!  And that was with oxygen on! I tried to give her Tylenol for her fever but she just vomited it all up and then continued to gag. 

We again called her pediatrician and he said to go back to the hospital.  So, we went and were admitted for the night.  This was on Sunday night.........and, unforutnatley, we are still here.  And we will be for at least another night. 

She is having difficulty getting her oxygen saturation levels steady.  She seems to do pretty good at night but then the daytime is worse.  Which is kind of surprising, because usually when you are sick, it is worse at night.

Before they discharge her, they would like her to be off oxygen during her awake times.  We know that she will probably need to have an increased level during sleep but she needs to be off while she is awake.  She had such a great night last night.  We were able to wean her oxygen through the night down to a level of 1/8 of a liter.  And then this morning, she seemed really good!  She was smiling and seemed more herself.  That was until we tried to take off her oxygen.  Her o2 levels pretty quickly deteriorated and then just hung around 85%.  They want it to be at least 90%. 

So, she is back on oxygen full time.  I think we might try again later tonight to see what happens.  I am not sure. 

Thank god I have my mom and dad close by.  They have been a HUGE help with Taylor! 

So, I hope this explains my lack of posting over the last several days.  Please say some prayers for Madi.....I hope we don't have to spend too many more days here!