Thursday, January 25, 2007
I have a praise/blessing to share from last week... I had tried to get Angeline on our insurance. I read a lot about our insurance and I felt that she did qualify even though initially they denied her, I went back and tried again. Since Angeline is a child placed with us for the purpose of adoption, she qualifies! Or at least I hoped that she would qualify... and this week an insurance card came in the mail for her. So the past two days that we spent at Children's hospital getting all her "parts" checked on, we were able to present them with an official source of payment! WHOOHOOOO!!!!
Good things come to those who wait and those who are persistent. :)
The appointments went well. Leishan and Lulu came with Bean and I to Seattle for the two days. It was nice that we had some family to keep us company. Angeline is so patient with everyone bugging her, she just did wonderfully. First we had PT. The PT did yet another assessment on her development. (This was the 3rd one since July and is the 3rd different kind of assessment that has been done.) I realized that since they are using different tools to do developmental assessments and since they are allowing different people to administer them each time, that can't be very valid or reliable! So I took the results and didn't get too worried about them right now. We are really pleased with the amount of "things" that she can do. And she is developing and growing, that is what matters to us, not what equivalent "age" she is at. Angeline will be 1 on February 1st, so she should be at a 12 month level.
For physical development she is currently at a 6 month age level.
And for "all other areas" she is at a 7 month age level.
(I am not sure why they would group the rest of the developmental areas all together. Socially I think she is far superior of a 12 month old. Her communicate whilst not always verbal, is excellent and she has typical fine motor skills... but whatever, we hope that next time they at least use the same "tool" to evaluate her.)
The good news is that she DOES qualify for the developmental delay program and I will be calling them to get her in ASAP now that she has insurance.
We then met with the developmental doc and nurse. Angeline's weight is currently 16 lbs. Her height, weight, and head size have gone a bit down off the "curve" that they were on, but the doc said not to get worried about that either. We will keep an eye on things. I just adore this doctor, he sits and lets me ask a million questions and never makes me feel rushed. He is such a blessing.
After feeling Angeline's head he was a bit concerned about her skull sutures and her fontanel. So being the on the ball kind of doctor that he is, he called over his friend from craniofacial and she took a "feel" of Angeline's head. (I was having flashbacks of phrenology lessons from Psych 101.) She said that although Bean's head isn't the typical "skull" of most babies, he is the way that her skull adapted to the hydrocephalus that she had for quite some time. So she has a bone in the center of her head that seems to be thickening and this will hopefully eventually come up enough to that she won't appear to have a flat or sunken area in the front of her head. It's certainly not an issue because she has the most beautiful curly hair that covers it up very nicely.
We then met with the dietitian who is happy to hear that Angeline is on regular formula not the special pre-digested formula. She is also off her meds for reflux and is doing fantastic with her bottle eating! Angeline still hates all kinds of baby foods. I think she just has really dull taste buds and likes things with more flavor. Plus she wants to be an independent feeder so we are just working on her chewing and swallowing. (Still no teeth!) We will start to transition Angeline over to milk in the next couple months and we went over a list of really great starter finger foods that will give Bean a couple more options with her diet.
That was the first day. On the 2nd day we had a VCSG (I think!) test that was an xray of her bladder/kidneys and then they catheterize her and fill her bladder with dye... they continue taking xrays and watch how her bladder empties and they look for any reflux of her tubes into her kidneys. This whole event was fairly traumatic for Angeline. She apparently has a really small and hard to find urethra so it took several tries until they finally called down a urology fellow to do the cath. This was the first time that anyone ever successfully put a cath in Bean. She was really good but the whole time I was breaking into a panic sweat because if the professionals were having this much trouble, how was I going to be able to start doing intermittent cathing if she had urine refluxing into her kidneys?
After the test we went and met with the urologist so that he could go over the results. The good news is that no urine is refluxing into Angeline's kidneys. The bad news is that she has no bladder control at all. Her bladder is functioning very typically of someone with SB at her level. (The L-5 spine level.) Angeline just empties her bladder constantly. This is ok for now. Really it will not affect her socially because this is normal for a baby. But as she gets older it may become a consideration and in order for her to ever be "dry" she will have to have at least one surgery. Then the result will be intermittent cathing in order to control when her bladder empties. The best thing for her bladder and kidneys is just to allow the normal process to go on for now. There becomes a greater risk of infections and illness when you start doing surgeries and cathing etc. but at the same time we know that Angeline may want this independence some day! So we will just wait until she is 8 or so and then revisit the options at that time. Angeline will go back for more testing later in the Spring, where they will measure the pressure levels in her bladder, then from there we just monitor things to be certain that she doesn't start refluxing or getting any kind of UTI or kidney infections.
Our last appointment was for new "boots". Dr. M. was not impressed that I took her casts off earlier than I was supposed to but understood my reasoning as to why I did it. (The snow caused us a missed appointment and his scheduling staff didn't return FOUR phone calls to re-schedule...) Angeline had a blast going swimming with me and taking lots of baths so I don't regret it one bit. BUT... Dr. M. wants to see us TWO more times for casts. So the next two Friday's will be spent in Seattle... then I think they will schedule her foot surgery fairly quickly after the last casts. There does seem to be a bit of regression movement once the casts are off. I am praying that this doesn't fall before I go to Haiti or while I am there. I need to be here with her for the surgery, its a big deal. I will ask more questions at next week's appointment and see what the big plan is.
"Sam" who is the tech that puts the casts on while Dr. M holds her ankles in place said that children often like to eat the casting material. Thanks for letting me know after the fact Sam. (We have really enjoyed Sam over these past few months. He is always SMILING!)
Ok well off to clean, home school and exercise! Thanks for the continued prayers. Angeline is still my greatest blessing. :) :) :)
I am now recognizing that no one who works for Lynx Air cares about my waist size, that they are just going through the daily routine of making sure that the plane is absolutely as safe as possible for their passengers. Thanks for the tips about how to go for several hours without having to go potty... and of course the tidbit of help about the air sickness bag being used as a last resort. Also the airport at CAP does have a bathroom just may need to bring you own TP.
Thanks everyone :) I thought that I would post these pictures because they may help someone else who is traveling soon with their anxieties.
Isaac continues to grow and learn, and seems thrilled with himself and all his new accomplishments! He’s so happy, and always is giggling and enjoying his little world that’s called the boat room. J He’s really getting mobile, and is all over the place. He’s trying to climb chairs, and is on his feet all the time now. He can take a few steps, but doesn’t really want to do it on his own. He has to be cajoled into trying to walk on his own, but will go everywhere if you don’t let go of his hands. As soon as you let go of him and let him try to stand alone, he plops down on the ground. J He loves toy trucks and cars, and is always pushing them back and forth. He’s trying so hard to talk, and can say “uh oh!” and uses that one all the time. Otherwise it’s mostly “ya ya ya!” We have big Rubbermaid containters that block off the hallway to keep the older kids separate from the little ones, and Isaac loves to bang on them and laugh. He and Wesley are good buddies, and as their cribs are right next to each other, they love to tease each other and play when they’re in their cribs. Unfortunately, Wesley’s mom came to take him home this week, but the good news is that there are still 10 other kids to play with! Isaac’s weight this month 16 pounds, 7 ounces.
Monday, January 22, 2007
Al Gore preformed an amazing explanation of what’s happening in the world’s environment in his documentary Inconvenient Truth. It’s an amazing movie/documentary I think you and the older kids would be fascinated with and perhaps even start up some great family discussions. It sounds boring…like a school class movie…though he did an AMAZING job speaking in simple terms and backing up all statements with facts, pictures of before and after of what’s happening and charts to prove his theory. It’s on video now. With your kids in home school…it would make a GREAT lesson for science!!! I highly recommend this video and would be THRILLED to hear what you think of it!!! Get out the popcorn!!! It will be a movie your family (the young ones will be bored) will not forget. It could even change their lives. It’s that powerful.
Monday, January 15, 2007
Thursday, January 11, 2007
QUESTION:As a Christian, how do I "let go" or overlook some of the bad behaviors? Sometimes, it is very hard to overlook the behaviors that I know are true sins, such as being disrespectful and using foul language. It is clear in the Bible that these are sins. So, how do I get where I can go with the love based approach and be "okay" with overlooking these behaviors at times? I understand it and believe in it, but I still have a hard time dealing with some of this at times. Any suggestions?
ANSWER:Dr. Post and I are asked this question quite often, so I'd like to use this eNewsletter forum to respond. I do ask that no matter your theological stance or spiritual belief platform, that you relax and continue reading with religious tolerance. I am not trying to convert anyone, just answering this parent's question. Sin is about being outside of God's love. If we're outside of God's love, we're in a state of fear. "There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love." (1 John 4:18). The question then becomes, how do you shift back into a state of love? To "let go" of these behaviors means to understand these behaviors and to recognize your responsibility as a parent to teach your child how to shift back. Our parenting paradigm discussed in Beyond Consequences, Logic, and Control, demonstrates how to do this through love, understanding, and acceptance. Correlating this to Biblical examples, the Gospel is overflowing with examples of how Christ helped to shift the "sinful" back into communion with God through love, not fear. Scripture also demonstrates the principle of discipling, showing us that the purpose of discipline is to teach. The word discipline comes from the Latin word "disciplina" from "discipulus" or simply, "pupil". Unfortunately, our cultural and worldly understanding of this definition has become distorted to mean to "punish." If we look at Scriptural examples of discipline or disciple, it is clearly shown that this process of learning is with gentleness, safety, and peacefulness. "Come to me, all you who labor and are heavily burdened, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart; and you will find rest for your souls. For my yoke is easy, and my burden is light." (Matthew 11:28-30) With this understanding of discipline, children learn to regulate through a safe, loving, and meaningful relationship. They learn to respect others, not from a place of fear, but from a place of love. As they are fully and unconditionally accepted through mistakes or poor decisions, they can change and "modify their behaviors" without shame, blame, or fear of punishment. This type of loving environment opens the doors for exponential growth in children. Unconditional love provides a foundation for a life free of limitation, lack, and scarcity. Abundance of love and forgiveness is far more powerful than consequences and control. One specific lesson that discipline teaches is responsibility. Again, the world has distorted this understanding of responsibility and has shifted the responsibility onto even our youngest of children. The philosophy of, "If they don't learn to be responsible now, even in kindergarten, then they'll never learn to take responsibility." Do you hear the fear in that statement? The truth is that children learn through modeling. As parents take responsibility for themselves and then for their children, this pattern becomes instilled in the children. Seeing adults take responsibility teaches children to take responsibility. Discipline is also an opportunity to develop strong relationships between parents and children. We see a great example of this in Scripture: "But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.'" (2 Corinthians 12:9). It is in our children's weakness, that we have the opening to support them, love them, and provide our influence (not power) as parents to build them back up again. As they learn to regulate through the parent/child relationship, they learn to connect with others outside of their family. They develop the ability as young adults to develop healthy relationships that are void of manipulation, control, and conditions. The book of Romans provides numerous examples for our love-based parenting paradigm. "If your enemy is hungry, feed him; if he is thirsty, give him something to drink." (Romans 12:20.) And thus, if your child is acting out, give him attention. If he is talking back and rejecting your directives, connect with him instead of rejecting him in return with consequences. If he is picking on his sibling, provide your reassurance in his place in the family instead of ostracizing him in time-out. The most concise example is when Paul writes, "Do not be overcome by evil, but overcome evil with good." (Romans 12:21). Taking the liberty to put this in the context of parenting, we can say that, "Do not be overwhelmed by negative behavior, but overcome negative behavior with love." May you always love and forgive yourself and accept yourself in order to be empowered to do the same for your children.
P.S.Do you like this eNewsletter? Do you find it helpful? Have your friend sign-in here or at www.beyondconsequences.com to receive his/her own copy.
Kelly and I will fly together to Haiti and be at COTP volunteering at the same time. It is a blessing to me that we can go together. Travel with a friend is always more fun.
Wednesday, January 10, 2007
P.S. Good news and exciting post coming soon! :)
Saturday, January 06, 2007
I have been slacking on the new Angeline pictures. So I thought that I would write an update and put some of the cute Christmas pictures up on the blog. Angeline and I are both sick with nasty colds today so please keep my little bean in your prayers. She keeps says... "Ohhhhhhhhhhhhhhhhhh" that is her way of letting me know she doesn't feel good at all. We have already called the doctor and we hope that she is better by the morning! (Or else he is on call and will come in and see her hopefully even though it's going to be a Sunday!)
Even though Aunt Nina made sure to have a dressy Christmas dress for Angeline and a casual Christmas play outfit, I didn't do such a hot job of getting good Christmas pictures this year! I get so caught up in the moment sometimes that I forget to get my camera. Aunt Nina is Angeline's god Mom and also constantly is keeping Bean up on her couture. :)
These pictures were when Dad took everyone else ice skating and Angeline and I stayed home and made fudge. Yes that is a bit of fudge on her cheek and yes that is whipped cream. Not that I spoon feed her whipped cream, but its great to use in a bowl with a little spoon that she can feed herself. Excellent for fine motor skills and she LOVES whipped cream! (Who doesn't?)
Angeline got new casts this week and we got back two more times this month for new casts. After that it looks like we will schedule her feet surgery. We also have her big bladder testing later this month. The last week of the month she has one test, one casting and 6 other appointments! Phew... she is a one busy girl!
Angeline will have her first birthday on February 1st. Amazing.
Other than the cold she is doing FANTASTIC. She should be starting work with a speech therapist (to help with swallowing issues) in the next couple weeks and is also starting infant massage. :)
Not an hour goes by that I don't look into her beautiful eyes and count every blessing bestowed upon me. More soon. I am off to snuggle my bean, she is miserable.
Wednesday, January 03, 2007
Here are some adorable pictures that added to my already happy day and just made it that much brighter! (Thanks Robin and COTP.)
Leishan started college today.
I am finally realizing what my parents were feeling the day that I started college. It feels like... where did the time go?
The other day I was doing the laundry and although typically the older children, like Lei, who is 19, do their own laundry... some of her things got mixed in with the pile. I was began washing some underwear and bras that I had never seen before... they were PRETTY ones, and not ones that I had bought! The notion of having a child, become an adult, then suddenly they buy their own clothing, and they like PRETTY panties and bras, was almost too much to take! And then today she is off at college!
I can't hardly stand it.
We had many rocky, shaky, scary moments with Leishan where we didn't know if she was going to get done with her education. She had gone to public school and not done well, we had her tested for a learning problem, ADD/ADHD, there had to be something wrong with her! They could find nothing. For many years we spent at odds with Leishan because we couldn't "fix" the problems that she was having with getting an education. We tried home schooling, Internet school from home, a special public school program, we moved clear cross country and she went to a new high school, and nothing seemed to make a difference. (We didn't move because of Leishan, but we did move from a top notch public school system to an "OK" one, so that we hoped would make a difference in her success.) There was nothing that we could get through to her. We watched her in classes like drama and creative writing, she would excel. And other classes like math and science that she would have an F that was so bad it was difficult to believe that she was actually attending school at all!
After we realized that she was going to not be able to continue going to high school because she was too old and too far behind, we gave in. In May 2005, Leishan dropped out of school. She promised us that she would get her GED, she swore up and down that she would do the practice workbooks and that she would complete her education and months went by with nothing happening. She did nothing! Our extended family was very upset that she dropped out, and even upset with us that we weren't "making" her do her work! She spent the year babysitting for two different families, one full time, and the other part time. She babysat at my home, where she also had the company of all her little brothers and sisters to drive her batty with the children that she was babysitting. :)
Then the month came that my brother and sister in law with four children under 3 (at the time) had to can their nanny. They were desperate... Lauren and I took over her babysitting her so that she could help them out for a month. When she got to Ohio she was bombarded with people telling her that "she HAD to get her GED"... that she "HAD" to do something with her life! They drove her insane. But something that someone said DID matter to her.
I had always told her that I would take her to Haiti if she finished high school. Instead of signing up for the GED classes, she was confident enough that she could pass the tests without taking the classes. We were leery, but it was her deal, and we had to let her try on her on terms. Meanwhile we were working on getting Angeline's medical Visa and Leishan finished all her GED testing RIGHT before we left for Haiti, Leishan had passed ALL the tests.
So for the past couple months Leishan has been working full time and she has been thinking about what she wants to do with her education. (We were also waiting on the financial aid paperwork to go through.) Leishan is doing her pre-req. coursework to get into a nursing program. She knows that she wants to be an RN. After all the help that she gave me with Angeline's care and from talking to family and friends in the medical field... and the time in Haiti, she wants to become an RN and would like to someday travel and work helping people all over the world.
We are so proud of you Leishan our big college girl.