Back on the Blog-Wagon

Things have been crazy busy lately and my uploader for my phone's camera changed all my file names to Chinese (yes, we bought it online from China) so I lost all my pictures :( Anyways, here are a few of the things we have been up to in the last month!

I got some free masking tape and let Gabriella play with a roll. She had a blast taping up Matt with it!

Xander loves chili! He also loves to ingest it with his entire body!

We take a lot of baths after meals.

Xander has turned into a little monkey. He climbs on everything! Gabriella insisted on taking a picture of him with her camera. She was saying, "Smile, bud!"

We had Xander's check-up with his ENT doctor. He is doing good, we are just to keep an eye on him as usual (for his lips or fingers turning blue, stopping breathing in the night, developmental problems, etc.). They thought he would have outgrown his tracheomalacia by now so we will be back in 8 months to check on him again. Hopefully he will outgrow it by age two!

We've had his lips turn blue on us twice in the last two months, but they always pink back up after a short time. I also have had to shake him a bit (quite a  few times) to get him to start breathing again at night. I'm so ready for him to be healed! This is has been so stressful! I hate listening to him breathe at night, or waking up feeling panicky because I can't hear him breathing. 

He also managed to get croup again *sigh* 

Okay, enough venting, moving on....

We got the Little People out of the garage and spread them out in the livingroom. Both kids loved them!!

I talked my  mom into a midnight couponing run to Walgreens on Thanksgiving morning!

Here's what I got at Walgreens (mom got the same stuff too)

I made $.61 by getting it! Regular price was $127.55 for all of it!

So happy my mom went with me! It was her first couponing trip and the biggest one I put together by myself. 

Good times!!

Matt set up Christmas lights the day after Thanksgiving. Gabriella calls it her party. Everytime we get home and they are turned on she says, "Can I visit my party now?"

Gabriella helped me decorate our tree. 

We put it on the table this year so the kids weren't getting into it every two seconds!

All my November freebies in the mail!!

Xander discovered that he loves hats!!

Playing with the ornaments on Gramma's tree...

My silly kids!!! Love them to pieces!!

Well, that's what we've been up to in the last month. Matt only has to work tomorrow and then gets 10 days off for vacation! We are so excited to have some fun family time and celebrate Christmas with all our family members! We are so blessed to have such great family that lives to close to us!!

Xander's 9 Month Check-up & Medical Update

Today was my little Roo's 9 month check-up. He is growing so big and starting to get quite a silly personality. 

Here he is, playing with toys at the office. 

He is 90th% for height and weight! His head size jumped up to 92% so we have to keep an eye on that. He isn't babbling much so we are watching that too because he is borderline too low. We also have to schedule an appt with his ENT because his tracheomalacia hasn't improved in the last few months. But he is happy, playful, and brings us smiles, laughter and joy every day!!

Croup in the Middle of Summer?

Seriously! Who catches croup in the middle of summer when "croup season" is October - April? Apparently my kiddo is so awesome that he did!

On Saturday the 18th Xander spiked a fever of 103.2 in the evening and started having febrile seizures (twitching & shaking then going stiff). I gave him tylenol and sat up all night keeping an eye on him. Sunday morning he seemed to be okay and his temp hung out around 100-101 all day so I figured he was on the mend. That evening he started having a dry sounding cough and was up all night fussing in his sleep.

Monday he didn't want to eat and if I set him down he would just sit on the floor and not play. I kept trying to get him to nurse and checked his temp regularly (still around 100-101). Monday night (at 10:30 of course) his temp shot up to 104.5, 45 minutes after I had given him tylenol.

I called the doctor's office and the on-call nurse told me to rush him to the ER since he wasn't eating, had a temp that high, and was acting lethargic and weak.

In the waiting room

(so sweaty)

So off Xander and I went. I don't even want to talk about how horrible of an experience we had in the waiting room (I was brutally honest about it in our post visit survey), lets just say that 4 hours in the waiting room with a very sick infant was not enjoyable for anyone waiting there.

We finally got back to a room and they got a pulse-ox monitor on him. His oxygen level was 96% but by then his cough had turned into that horrible seal bark that is obviously croup. They gave him some medicine to lower his temp and some steroids for the croup and respiratory infection (viral) that he had. They gave him the steroids to make sure that he didn't get any sicker since his tracheomalacia was flaring up and makes him more susceptible to it turning into pneumonia.

We got home at 5:15 am Tuesday morning. Matt took Gabriella to work with him and a friend met him there and watched her all day for my sake (praise, Jesus!).

At our follow-up appt on Tuesday afternoon with Xander's doctor, he got another dose of steroids (a shot this time) because his pulse-ox had dropped down to 88%.

Waiting for the doctor. 

Chewing on a bottle of Pedialyte while we wait to make sure he didn't have a reaction to his steroid shot. 

(he looks so pale in this shot, it makes me so sad)

Wednesday we went to my mom's house so Gabriella could play with cousin James and I could take a nap with Xander. (thank you, mom!)

Gabriella dove at the couch next to my dad and hit her face on the cushion. She insisted that she needed a band-aid on her nose. 

Still looking so pasty and sick :(

Wednesday afternoon his fever broke and he broke out in a rash. I called the doctor and they had me bring him in to make sure everything was okay (due to all his crazy medical stuff)

When you have a rash, you have to go to the back door of the doctor's office and you follow these funny colored footprints down the hall to the door. Gabriella was pointing at them. 

A shot of his rash (and umbilical hernia)

Gabriella had the hugest meltdown at the doctor's office. The nurse was so nice and picked her up and hugged her and then brought her some snacks that she found in the break-room. We are so blessed with our doctor and her nurse!

Gabriella also got to color. Here is a shot of the "letter J" she wrote all by herself. 

(not too shabby for 2 1/2)

More rash :(

His rash turned out to be roseola. So home we went, praying he would heal up quick. 

Gabriella and I stopped for a treat on the way home. Here she is drinking her peach smoothie. She was pretty excited!

Friday he still had a bit of rash but he was obviously feeling much better. Getting his color back, eating again,  but still very wheezy. 

And a week later. Back to his old self! Praise Jesus!!

Xander sure has given us quite the run around with medical stuff, but he is such a wonderful blessing to us! We love him SO much!!

Xander's Half Birthday & Medical Update

Xander turned 6 months old on June 29th and we celebrated his half birthday just like we do with Gabriella. As tradition calls for, he got to have his first donut!

Here he is playing with the chocolate frosting on the donut right after daddy handed it to him.

A video of him eating (or trying to absorb it)

And all done, right before we headed to the bath!

He had his 6 month check-up on Friday, July 6th. 

He weighs 20 pounds 11.5 ounces (90th%), his head is 90th% and he is 27 inches tall (75th%)

He's ahead of the curve physically (already up on all fours and trying to crawl, trying to pull himself up on things and working on feeding himself). But is not "talking" yet. He growls and squeals (quite shrilly) but no words formed yet. His doctor isn't too worried about that. 

His tracheomalacia seems to be doing better as long as he stays healthy (no colds or coughs) and doesn't try to breathe in any bath water again. He still wheezes (on the inhale and exhale now) but only when he is sleeping or falling asleep and not every time he nurses anymore. 

He loves the fact that he can sit up by himself now and he likes to play in the tub and bat at the water. We take at least two baths a day, usually after he eats. He likes to suck on his thumb in between bites so it manages to get all over him quite quickly. 

In this picture you can see a small ridge on his forehead. It starts on his forehead and goes up into his hair and about two inches into his hairline. I noticed it a couple weeks ago and thought it was from him bonking his head on the floor from falling over while sitting up. But then it never went away so I pointed it out to his doctor at his check-up. 

She felt around his head and was concerned that he may have craniosynostosis, a birth defect that causes the bones in his head to fuse together prematurely and cause a ridge-line. (see Mayo Clinic for more info)

So, now we have to go to Portland in the next couple weeks (I will be getting a call with our appointment next week) to get it checked by a neurosurgeon to see if he needs surgery to fix it. If he does need surgery it would be because his head will be unable to grow properly which will in turn cause a misshapen head, face and brain (which will affect his development, etc.)

I have been getting overwhelmed easily lately and we had thought we were out of the woods with him on medical issues since his tracheomalacia and laryngomalacia weren't getting any worse. When I heard about what his head problem was I had a meltdown. Praise God for a supportive hubby who called my mom (after I called him crying) and she had me come out to her house. She watched both kids for me so I could go in the other room and take a nap by myself and try to relax. 

After having a few days to process this and look into treatment and how surgery would be done if needed (pulling back his skin and un-fusing the bones and correcting any bone problems underlying. Its quite graphic and burly to look at pictures) I felt better. I like to be informed about things. Knowing what we are up against makes me feel calmer about things. 

We are believing that God has what is best for Xander in mind. We know that he is a miracle baby, born from a woman who was physically diagnosed as infertile, and born during a time in our lives that was full of turmoil. He had had numerous prophecies about his HUGE future and the MEGA impact he will have on the world for Jesus. He is our treasure, and we cannot imagine loving him more. But at the same time we know that God loves him even more than we ever could. 

So we are praying and believing that his skull bones will be healed by God and that no surgery would be needed. That his little head would always be as perfect as he is! Thank you for joining us in believing this miracle!

Carrots!

Xander had his 4 month check-up on Monday. 

He weighs 16 pounds 13 ounces (90th%), is 25 inches long (50th%) and his head is 17 inches (90th%). He is right on track developmentally (a HUGE relief to hear since developmental delays are a common problem with tracheomalacia cases). We got the "go ahead" to start feeding him food besides just rice cereal and breast-milk.

Here he is after eating carrots. Apparently they taste better when you try and ingest them with your whole body.....

Last Saturday was the Central Point city-wide yard sale. All in all the yard sales were kind of lame, I think we spent $5 total all day. So that was disappointing. Until my sister-in-law and I went out later in the afternoon. We scored these AWESOME Captain America costumes at a yard sale!

Xander Breathing

Here is a video of Xander breathing last night (for those of you who don't follow my Facebook page).
The rasping is him with croup and the wheezing sounds are his normal sounds from tracheomalacia.
This is his second night with croup and these sounds were better enough for me to feel comfortable keeping him at home and not going back to the hospital. Be warned, it is very sad to watch.

It is so hard for me to watch him struggling to breathe constantly. He is getting better with the tracheomalacia but he still makes awful sounds when he is eating, sleeping or lying down. We also have to be careful not to let him get too excited because the harder he breathes the worse it is. 

These last few months have been a trail for sure, full of ups and downs, scares and moments of peace. 

Xander turns 12 weeks today and we are so thankful for his little life! We believe strongly that he has a MEGA destiny and we are looking forward to the glory of God being revealed even more in his life!

Doctor Visit Fun (not!)

Poor little Xander has been so sick lately. He caught Influenza A and then a cold. But for how sick he has been he has been so happy and smiley!

Chillin at the doctor's office. 

Last Tuesday we had a chest X-ray done to rule out pneumonia. It came back negative so we were very relieved!

Gabriella likes to color. She did not color this picture, she was scribbling over it!

On the way home after a trip back to the doctor on Friday to get rechecked. 

Poor sleepy guy!

Gabriella held Xander's hand the whole way home and was singing songs to him so that he would feel better. 

Moments like these are so precious to me. I love that my kids are already best of buds!

We woke up at 3:30 this morning to him making horrible noises when he was breathing. He was making a barky/seal sound when he was exhaling. It was so scary! I loaded him in the car and we went straight to the emergency room! The doctor there watched him for awhile and then sent us to his pediatrician's office as soon as they opened.  After another hour at his doctor's office we found out that he has croup but it is complicated with his tracheomalacia. So they aren't sure how much is croup and how much is from his normal breathing problems. We are on "baby watch" and keeping a close eye and ear on him for the next couple days. Normal croup with wheezing gets treated with steroids or antibiotics, but since Xander is so young still we are trying to hold off on the medication since the risks are pretty high. Thank you all for your prayers. Please continue to pray that his croup would be gone quickly, that he would get better without needing medication, and for peace for us (especially me). It is absolutely terrifying to hear your little one gasping and wheezing and be able to do nothing to help them. Last night/this morning was the worst he's ever been!

Xander Medical Update

Well, we've had a TON of doctors appointments in the last month for little Xander. We finally have an official diagnosis and a plan. Phew!

Okay, when he was first born we noticed a high-pitched wheezing sound that he made when he nursed. Then it started happening every time we laid him down to sleep, when he spit-up and at random times throughout the day. I took him to the doctor when he was a month old to get it checked. She listened to a recording that I made of the noise (imagine an overweight asthmatic right after they ran a sprint wheezing into a microphone). Her exact words were, "thats quite an impressive noise" and sent us straight to the hospital for a chest x-ray.

When the X-ray came back normal (praise Jesus!) we were sent to an ENT (Ear, Nose and Throat specialist).

Their office was super scary to walk into. All kinds of metal pokey things, tubes, machines, etc. I was really glad that Xander didn't know what was going on. 

He was a super sport about it all. The doctor used a camera-scope to look up both nostrils and down his throat. Xander was super mad about it being in his nose, but when they stuck it down his throat he started sucking on it. It was so cute!

Anyways, the ENT told us that Xander's pallet was perfectly formed (again, praise Jesus!) and sent us to the hospital for an Airway Flouroscope and Swallowing Study. 

Two days later we were at the hospital for his tests. Once again, he was a good sport but not very happy about it. 

(this is the flouroscope machine. The picture is blurry cuz I was trying to take it without getting caught!)

They had him drink some barium stuff and it lit up on the tv screen. Even my untrained eyes could see very clearly what was wrong, his trachea was collapsing with every breath. Then he started to spit-up the barium. 

So, after talking to the radiologist and the ENT again, we went back to his pediatrician today. 

Xander officially has laryngomalacia and congenital tracheomalacia combined with GERD (gastro-esophageal reflux disease). He also has an umbilical hernia and a ventricular wall hernia. 

Laryngomalacia is a weakened cartilage of the larynx, or "voice box" that is very common in infants. It causes the cartilage to mildly collapse when he inhales, which makes a mild wheezing sound. Congenital Tracheomalacia is very uncommon in infants and is always accompanied with either heart problems, developmental delays or GERD. The trachea cartilage is weakened and collapses (usually) on exhale. Xander's is collapsing on an inhale. Basically, when his lungs fill with air and expand, it should be pulling his trachea open (like it does normally for us). His cartilage is too weak and the pressure inside his chest from his lungs expanding is causing the trachea to collapse. That is what is causing the horrible wheezing sounds. As far as the complications that it is always accompanied with so far he is only showing signs of the GERD (a huge praise JESUS!) and is right on track developmentally. Both of these conditions should fix themselves by the time he turns 2. 

The umbilical hernia is from his umbilical chord being thick and poking through his stomach muscles and lining. They expect it to heal on its own by the time he turns one. 

The ventricular wall hernia is one was have to keep a close eye on. It is part of his intestines that are poking through his abdominal wall. If it gets bigger or hardens, we will have to discuss surgery to fix it as it can cause more complications than the umbilical hernia. 

Our plan for now is to put him on reflux medicine to cut down the acidity of his spit-up. We have to keep him elevated during and after feedings for 30 minutes. We also have to keep a close eye on him for turning blue (indicating he isn't getting enough oxygen) and pneumonia symptoms (babies with tracheomalacia are much more susceptible to respiratory infections since they aspirate their milk/food much more easily), which also means that we will be very careful with him being around anyone with a cough or cold. Plus keeping an eye on the two hernias. 

*sigh*

Its been a crazy month of appointments and researching, but we are so thankful to have a definitive diagnosis for the noises and complications that keep me up most of the night listening to so I can make sure he is okay still. Matt and I are both thankful that all of these "problems" are no match for our awesome "Problem Solver"! Jesus is good, all the time!

We appreciate your prayers for Xander and his health, that these conditions would heal quicker than normal, and that he wouldn't experience any of the possible and likely complications from them. Thank you so much!!

We love our little man so much and are looking forward to seeing all the good that God has in store for him out of this situation!