Tuesday, September 30, 2008
Sunday, September 28, 2008
Here are the cupcakes from the party. I am very basic, no frills so I would normally slather on some frosting my brother, Uncle Scotty, told me how to make the cupcakes look like I spent hours on them. I thought they turned out really nice. Thanks Uncle Scotty!
Here's the princess. She's not really into princesses but she loved the girly pink of her party and she loved her dress. It was HILARIOUS! She sat down in the middle of the grass, waited for everyone to gather around and gawk at her. She truly sat there posing for every camera in the family to take pictures and ooh and ahh over her. She was posing it up!!! She was turning her heard, putting her hand under her chin, holding out her painted nails. It was SO funny and SO Jordan. :)
Here are her beautiful nails! I've waited so long to be able to paint her fingernails and it was really special. I waited to do it for her birthday and had so much fun! Her little nails were really hard to paint but we managed and the one foot looks so cute that is missing the tip of the toe because, of course, there is no nail on that toe. Regardless, we had a great time and Jordan loves them. She was waving them around showing them off.
Noah had a bit of a tough time today with all the attention heading Jordan's way but by the end of the night he came around a bit. He sure loved the cupcakes!
One more milestone for Jordan...
We told her craniofacial sugeon (Dr. Kawamoto) that we wanted her to be able to blow out her candle on her 2nd birthday. He said he'd do his best. He did an awesome job on her palate and with time spent in speech therapy we've worked on blowing air out. Today she did it! She blew out her candle on her birthday cupcake. She is SO funny though because every time she blows the candles out she gets scared and freaks out. She signs "all done!" with her hands, looks very alarmed and says, "Oh no!" It's as if she's not sure what she's done. Everyone was cracking up. She was the star of the show and we just love her so much.
Happy birthday Jordan Joy!!!! (her actual bday is Tuesday even though today was the celebration)
Wednesday, September 17, 2008
Dr. Y took x-rays, wiggled teeth, and poked around in Noah's mouth concluding that the front tooth that is still in place is broken up in the root and will die and turn gray. We will watch it for infection and it will probably fall out sooner than the rest. The smaller tooth on the other side of the one that came out has been knocked out of place and is a bit loose but the x-rays do not show that the tooth is broken. He said that his guess is that there has still been damage to it and it will probably die and turn gray too. Noah can't bite into anything for a week and can't eat anything hard since the teeth are loose and could come out. He'll drink from a straw until then too. He has his first day of preschool tomorrow so I'm praying he doesn't eat anyone else's snack and that he doesn't bump his teeth at all so they don't come out too.
I'm still getting used to seeing him with a missing tooth but I'm feeling much better about the whole thing, especially since he's not hurting anymore. I still think he is a bit traumatized by the whole incident. I layed down with him today at naptime and he wanted to lay on my chest. He couldn't get comfortable so he tried laying on his back on me then finally snuggled up in my arms with his face in my neck and fell asleep right away. Normally he's not the cuddly one and hasn't snuggled up like that since he was a baby. I wasn't complaining that's for sure. They grow up way too fast and I'll take any moment like that I can get - especially from my big boy. :)
I took pictures with a disposable camera and after preschool tomorrow I'll post them here.
Tuesday, September 16, 2008
I hate to have to write this post but I'm hoping it will be a bit therapeutic. Noah knocked his front tooth out tonight. I can't believe it - I'm in such shock.
Shan was gone and I was taking the kids to dollar scoop night at Baskin Robbins (a usual treat for this ice cream loving family). We stopped out front to talk to a few neighbors and Noah had a handful of toys. Somehow he fell but wasn't able to catch himself because of the toys in his arms. He was laying there crying and crying and then the blood started so I picked him up assuming he split his lip. My neighbor told me his tooth was on the sidewalk. Ugggg!!!!! He was bleeding so much and wouldn't stop crying so a neighbor took Jordan and I called the dentist. About a year ago or more Noah was at Scooter's Jungle (an indoor bounce house place for kids) and he fell and bumped his front tooth. It eventually died and turned grayish brown. That's the tooth he hit tonight and the one that came out. I was planning on taking him back to the dentist soon anyway because I suspected it was infected. In talking to the dentist tonight he said that his best guess is that the tooth would have had to be pulled anyway within the next few weeks so better (and cheaper) that it happened tonight. I was able to pray with Noah about it (he was TOTALLY freaked out) and talk about God's grace and mercy in having it come out on its own rather than having the dentist pull it.
The bad news however is that I checked before bed tonight and the two teeth next to it are VERY loose and the gums are grayish and puffy. I have a feeling those two are going to die and eventually fall out too. That would mean he'd be missing his front two teeth and the one next to them. Oh boy. I've always been a borderline vain person. I don't really think it's a major sin issue in my life but vanity is for sure one of those "respectable sins" that lurks underneath and others may not really call it sin. Thankfully tonight I wasn't upset by the fact that he will have a missing tooth/missing teeth. We shall see what the dentist says tomorrow and I'm getting a disposable camera to use tomorrow and until my camera is returned from the shop.
I'll post again tomorrow after our dentist appt and talk more about the infamous tooth fairy and what we've decided to tell the kids.
Friday, September 12, 2008
Here' s part of the article...notice the italicized part...I was laughing out loud.
Streeter dysplasia is a term used to describe a complex disorder characterized by constricting rings, acrosyndactyly, or, often, amputations of the extremities of neonates. It is analogous to constriction band or amniotic band syndrome (ABS), which was recognized as early as 300 BC. Hippocrates suggested that extrinsic pressures from a ruptured amniotic membrane lead to the formation of bands or digital amputations. In 1652, J.B. van Helmont reported on intrauterine amputations, which he attributed to the pregnant mothers having looked upon maimed soldiers. Montgomery in 1832 and Simpson in 1836 subsequently described series of amniotic band–associated deformities and discussed the differences between agenesis- and amniotic band–induced amputations.
The term "Streeter dysplasia" did not come into use until 1930, when George Streeter postulated a germ plasm defect as one plausible etiology. At that time, his theory was well accepted because of the associated anomalies, which occurred far from the site of the constriction bands. In 1960, Patterson used histology to show how constriction bands looked like normal skin creases. He hypothesized that the same lack of mesodermal development occurs in the area of the band, thereby making the bands simply abnormal creases.
Patterson's theory was later refuted by Richard Torpin, who examined many placentae and infants with the disorder. In 1965, he reintroduced the idea originally held by Hippocrates. He proposed that maternal trauma led to rupture of the amniotic membrane, which then formed into strands. These encircling strands cause extrinsic compression on the head or limb, leading to the formation of bands, vascular occlusion, and, eventually, amputations. Currently, this is the most widely supported hypothesis; therefore, this disorder would be more accurately termed ABS.
Thursday, September 11, 2008
Although we don't technically celebrate Halloween we do get the kids dressed up as something non-scary and we do a loop around the block with their friends then head to church where we have a Harvest celebration with rides, pony rides, treats and so much fun. At first I was SO upset that we'd miss it and I started to feel sorry for us that we seem to miss all the fun. If you remember how challenging last Halloween/Harvest Day was for us, (see blog post) and the emotional rollercoaster it was, you will understand. Again I just want to be like "normal" families whose lives aren't interrupted by surgeries etc. However by God's grace I able to gain perspective and be thankful and content with every circumstance, understanding that I prayed last night and today for God' s timing and this is it. We were at CHOC two years ago Halloween and I remember seeing all the patients and their siblings dressed up in fun costumes having a parade through the hospital (also another post on the blog you can read in the archives). At the time it was certainly surreal realizing that we are stuck between two worlds sometimes - the world of the sick where "normal" is interrupted and then also the typical world we live in that doesn't involve hospital stays, surgeries, therapies, etc. What a gift that we get to be a part of both. I'm so thankful for the families we meet and connect with at hospitals and I'm so thankful for the other world we are a part of - the typical world.
I called the Child Life Dept at the hospital and talked to them about what they offer kids on Halloween. For sure it won't be a godly, Christian Harvest celebration but it will be fun for Noah regardless. We will take him with us the morning of her surgery and while she's having her surgery he'll get to head down to the peds floor to play in the Child Life room with the other kids, making crafts, decorating cookies, and going trick or treating around the hospital. We will sure miss our church family at the Harvest celebration but what an opportunity for Noah to be surrounded by children who are suffering and who lives are also interrupted. What a chance God has given us to further teach Noah about compassion and service. The possibilities are endless - I'm wondering if I should talk to our Kids Ministry staff about having the kids make Harvest crafts for Noah to give to the patients as an addition to their "Halloween" stuff. Hmmm...I'll start praying about that now and you can join me. :)
So there it is - surgery scheduled for October 31st and we'll be staying two days beyond that if all goes well.
Wednesday, September 10, 2008
On to the update:
We met with Jordan's new orthopaedic surgeon yesterday. He is the head of orthopaedics at UCLA and is my new favorite person. Honestly surgeons are total brains and because of that they usually lack the social/people skills that make you truly enjoy their company even though they are really nice. Honestly I am so attached emotionally to all of our surgeons because of what they do for Jordan and for the fact that they walk through some challenging times with us being steady and sure when I'm waivering (God is obviously the one ultimately in control but he uses them in mighty ways that are beyond my understanding). You can see a photo and bio of William Oppenheim if you Google his name with UCLA. He is warm, caring, thorough, patient, he listens, he's helpful and he gets things done. He spent nearly two hours with us which is UNHEARD of in the world of HMOs where each doctor only gets paid for 13 minutes with each patient. He had a waiting room full of patients but knew we drove 2 1/2 hours to see him. Okay enough about Dr. Oppenheim here' s the scoop...
Her R foot - Jordan's right foot has a condition called Congenital Vertical Talus or Rocker Bottom Foot. Basically the bone that connects the forefoot and the hindfoot is at a weird angle pointing down toward the arch of the foot. Without surgery she would eventually not walk on it or not without great difficulty, callouses, and an open wound where the bone would wear down the skin. He x-rayed it and said the surgery is very complicated and detailed and would take 2 to three hours. He will move the bone to the correct position, pin it in place, then cut the two tendons that are stretched out and wrap them around the middle foot securing them. He will then cast her leg...for three months! Yes, she will have a cast for three months and I'm assuming the pins stay in forever. The first six weeks he'll make the cast up high in a shape that will prevent her from walking on it. After that she will have a lower walking cast with a walking boot. How cute will that be - it'll be so tiny. We are trying to schedule surgery for mid-October.
Her hips - The doctor thought Jordan had a leg length discrepency so he considered the fact that she may have hip dysplasia. He did x-rays of her hips and found that she does not. Wheew!
Bone Development - The doctor here in Orange County who looked at Jordan's foot said that her bone age is delayed and that it was probably due an underlying nero-muscular syndrome (in addition to the Amniotic Band Syndrome). I was doubtful and so was Jordan's PT. Dr. Oppenheim said that her bone age is okay so we shouldn't be concerned.
Height - I talked to him about our concerns with her height and her slow growth. She has never been on the growth chart (she's not on that percentile chart that is used to compare children to other children their age - she is to short to make it on the chart). Our geneticist was monitoring her slow growth and was concerned when Jordan was an infant but we haven't been back to see her since we've transitioned most of our care to UCLA. Dr. Oppenheim suggested we see Dr. Pinchus Cohen at UCLA's Growth Disorders Clinic. He said that he is an endocrinologist who can help us. He said that hands down he is the guy we want to see. Shan and I are very excited to finally figure out if there is an endocrine/hormone issue. We're waiting on insurance paperwork to schedule it.
- That all paperwork and timing works out easily with little effort.
- That God's timing is what I want rather than my own.
- That I will take my thoughts captive as we approach another surgery. After our last one (see blog posts in October '07) I find myself needing God's word more and more to protect me from being fearful, that remind me of God's sovereignty. Having moments where I thought we lost her and then the shock of seeing her on a machine for a week has really impacted me more than I thought. I KNOW that I am to not be anxious about anything so I will continue to fill my mind with the truth of scripture as the surgery approaches.
- That more and more I would have opportunities to impact people for God's glory.
Someone asked me yesterday when Jordan's surgeries will be done and in telling her I was kind of shocked myself at how many she will have had by the time she is old enough to drive a car and vote for president. She has had two major surgeries so far (multiple surgeons invovled at least 6 hours the first time then 7 or 8 the second), a minor ear tube surgery, she'll have the foot surgery this Fall, another hand sugery in the Spring, then facial and tear duct surgery next Summer. The foot surgery she'll have soon will possibly need to be redone (50% chance) when she is five and we are expecting at least one more cosmetic surgery on her face during childhood. She will have at least one dental surgery but possibly (worst case) a jaw surgery, another thumb surgery (the one he'll do in the Spring will need to be redone) and probably a fine tuning of her face as a young adult after puberty. Wheew! That is potentially 12 surgeries not counting ear tubes. Weird to think of it that way. I guess that's why we are told to focus only on one day at a time. I often think of the Israelites that God led into the desert for 40 years. He only provided enough food for them for one day at a time. They couldn't store it up, they couldn't make it, they had to see one day at at time and trust in God's provision.
In the beginning I couldn't wait to see who God would bless and work on through this. Logging on and reading a comment to my last post titled "Bittersweet" I was SOO encouraged. God is indeed using our trials to spur on others. Adrienne (the girl/woman who posted) said that she has been following our blog since Jordan was an infant! That blows me away. She is a missionary in Guatemala who takes care of children with clefts. She has been encouraged by my blog and by God's work in our lives. This is one example of how God has used our circumstances for other believer's good. I may never meet Adrienne but I am so thankful for her comment and the encouragement that it gave me. It really encourages me to post more often so watch out everyone. :) I'm getting my life organized right now and I'm going to schedule in a bit of time every few days to blog.
Thursday, September 04, 2008
About a month ago Jordan took her first steps and now for about one week she's really been walking and not crawling very much at all. I think we can officially say she's a walker now, one month before she turns two. When she first started walking at therapy I was excited and relieved but for some reason I felt a bit sad too. It was so weird that I didn't even mention it. Yesterday we went to therapy and saw Jordan's little friend Ashley come in (her mom is the one who sold us the amazing jogging stroller at exactly the price I prayed for). Ashley will not walk in this lifetime and even has a hard time holding her head up. There have been many days where we've struggled together getting the girls to motivate each other to move with their devices (Jordan's various bars and walkers and Ashley's special high tech walker that enables her to be upright). When Ashley's mom brought her in yesterday in her stroller and Jordan walked right up to her it hit me. I realized exactly why Jordan's walking was bittersweet for me. I could hardly look Ashley's mom in the eyes I felt so sad and almost guilty that Jordan is walking now and Ashley is not. Her mom was so genuinely excited to see Jordan walking around but I couldn't help but feel bad.
I know that in the past there has been a tiny occasional twinge of sadness as I've watched my friends babies half Jordan's age surpass her so quickly and effortlessly (particularly when we weren't sure if or when development would take place) so I feel like I can understand a fraction of what the moms at therapy feel when child after child takes off walking and they are once again faced with the realization and the reminder that their child's life will be different.
Simply put this all falls under the umbrella of discontentment (if that's a word). God has a different plan for each and every one of us - a perfect plan for His purposes and anytime we look around us and compare it's sinful. God has handpicked each situation for us and has given us every single tool necessary yet we continue to look around and want something different.
From now on as Jordan meets more and more milestones I will thank God for His provision and only look around me in order to find someone else to encourage and to pray for. I will turn my bittersweet moments of Jordan's progress into opportunities to pray more fervently for the parents whose lives will be different and more challenging than my own.