Palate surgery

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We got to the hospital at 6 am for check in. By 7:30 they were taking Maggie away for surgery, which was scheduled to begin at 7:45.

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The first order of business was to replace her ear tubes as one was blocked and the other looked to be coming out. The ENT said cleft affected children on average will go through four sets of ear tubes.

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I love this app that UAB offers..

Once that was done Dr. Peter Ray began her palate repair. He finished faster than we expected, in about four hours.

Dr. Ray felt good about how the repair went. She is at greater risk for developing a fistula since her palate cleft was so wide–13 cm. This is still a matter for prayer.

There was good news as well. The depth of the cleft was only 8 cm from front to back, which is less than what Dr. Ray expected, and  it is good news for her speech development going forward. Also, she has larger muscles in the roof of her mouth than they thought she would have, which gave them more to work with…that was a direct answer to prayer! A fellow cleft mama had told me they were praying the doctor would find more to work with than expected during surgery, so we began praying for the same thing–what a blessing and an encouragement to see this specific prayer answered!

Maggie found her nightly wagon ride very relaxing.

Notice she has a grape jelly packet in her hand–she would much rather hold that than any of the toys I brought. She was clutching a pat of butter in her other hand most of the evening, lol!

Maggie did well her first night. She drank a bottle of juice and even ate a good dinner, which was surprising. The surgeon said it is rare for kids to eat the first night after surgery, but Maggie is a tough cookie and she never misses a meal if she can help it!

She was pretty weepy and fussy, though, which was to be expected. The doctor said it would likely be a hard night for her, but it wasn’t too bad. She slept through the night, waking only when it was time for more medicine (every 3 hours) or whenever the night nurse came in to fiddle with her IV line, take vitals, etc. (which happened far too many times, in my opinion!).

We took her arm splints off for one minute to change her clothes and her hands went right to her mouth. The doctor would like her to wear then 24/7 for 3 weeks if she can tolerate it.

Maggie found her nightly wagon rides very relaxing.

Maggie found her nightly wagon rides very relaxing.

She did not want to drink her bottle the next morning but she was hungry. Breakfast was late in arriving so I gave her some chocolate pudding. It was a revelation to her! I do not usually give her chocolate as it makes her drool and it’s messy, but that was all I had at the moment so she loved her “breakfast of champions”. Later, when breakfast did arrive, she ate that, too. She was starving!

The IV line kept her close to the crib but she still wanted to pull up to stand.

The IV line kept her close to the crib but she still wanted to pull up to stand.

Day two was pretty challenging. Maggie was totally bored and ready to bust out of the hospital, but she still wasn’t doing well enough to come home. She got off the morphine but was still in pain, and still refusing to drink.

There was a nice playroom on the floor where Maggie stayed. She enjoyed it!

There was a nice playroom on the floor where Maggie stayed. She enjoyed it!

She was allowed off her IV a couple times for play breaks and that really helped. Ultimately she was released on Thursday, two days post-op.  She is managing her pain but still not drinking. The doctor said some kids can go weeks without drinking–as long as she is eating a good pureed diet she will get enough fluid.

We had a great view from our window and we enjoyed sitting in the sill, watching the lights and a minor league ball game each night.

We had a great view from our window and we enjoyed sitting in the sill, watching the lights and a minor league ball game each night.

That makes this mama a little nervous, but so far so good. She still has tears, still pinks up when squeezed, and still has wet diapers. They say her drinking will come back like flipping a switch whenever she is ready, and that with this surgery it is much easier to eat than it is to drink. I can get her to “drink” a little bit from a spoon, but not much. She will also let me squirt a few swallows of juice into her mouth from a juice box occasionally, but not often. We have tried syringes, straws, bottle, cup, etc. She just isn’t interested–it hurts! But she is chowing down on smoothie, yogurt, pudding, ice cream, jello, and baby food. And she is happy to be home! This girl likes to go, go, go and she has the roam of the place here.

Thanks for your prayers. Please continue praying that she does not develop a fistula, that she will start drinking soon, that she can manage her pain, that she continues to sleep well at night (this was a HUGE issue after the last surgery and so far it is going great!), and that she can tolerate her arm no-no’s.

 

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Ages and Stages: 12 month skills at 18 months

Molly's IPhone 426

March 2014

Maggie will be 20 months old on April 4th. At her recent 18 month check up she was still quite delayed. This is to be expected–I recently spoke to one of Lifeline’s social workers and she said that a child adopted under the age of 2 years old will typically take 12 to 18 months to catch up. We have had Maggie home in the US for 6 months as of this week.

She enjoys riding in her wagon.

She enjoys riding in her wagon.

Her height and weight at her 18 month check up (2/21/14) was weight 23 lbs 13 oz., length 31″. Her growth over 4 1/2 months time was such: on October 1st at her first appointment she was almost 14 months old, weighed 18 lbs 10 oz and was in the 20th percentile for weight. Her height at that time was 28.5″ and she was in the 7th percentile for height. Her weight on 2/21/14 at 18 months was 23 lbs 13 oz, putting her in the 63rd percentile. Her height at that appointment was 31″, putting her in the 22nd percentile. I asked the Dr. to give me a 12 month survey so I could see how she stacks up compared to typical 12 month old skills. As of today, here is where things stand: Molly's IPhone 092 Communication: Maggie can play peekaboo, clap hands, do “so big” and wave bye bye on command (when she wants to). She can do this without being shown, just asked verbally–a 12 month old skill would be any one of these, and she can do them all. Maggie can follow one simple command such as “come here”, “give it to me” without me using gestures. If I ask “where is the ball (hat, shoe, etc.)” she looks at the object. She recognizes and knows many objects–knowing one object is a 12 month skill.

The stairs is the only place in our home that we can get her to crawl. It works! The PT wants her to practice on the stairs every day.

The stairs is the only place in our home that we can get her to crawl. It works! The PT wants her to practice on the stairs every day.

She occasionally seems to say “mmmmm” for yummy but she doesn’t really seem to say “mama” any more–we thought she was saying that but she stopped. Once she said something that sounded like “uh oh” and once “hey”–but never repeated–so words/sounds are still only emerging. We aren’t getting any consistent words yet. She sometimes points when she wants something. She can indicate her desires, but pointing is an emerging skill. Usually she just holds her whole hand out instead of pointing one finger. She also sometimes shakes her head for no–not for Yes, though.

Maggie's typical "pointing" uses her whole hand

Maggie’s typical “pointing” uses her whole hand

Gross Motor: Emerging Skills: While holding onto furniture she is starting to try and bend down to pick up a toy from the floor and return to standing. She also tries to lower herself with control (without falling) to sit. Both skills are emerging–she will hopefully be doing both within a week or so.

She has worked a lot with her physical therapist on learning to squat and bend down.

She has worked a lot with her physical therapist on learning to squat and bend down.

If we hold both hands to balance her she can take several steps without tripping or falling. She cannot walk when holding one hand, though, and she cannot stand up in the middle of the floor by herself or walk alone.

Maggie was motivated to stand on one leg at these fountains so that she could hold her other leg in the stream.

Maggie was motivated to stand on one leg at these fountains so that she could hold her other leg in the stream.

In fact (and this isn’t even on the chart, probably because it is on the 9 month chart) she is starting to pull up to stand using furniture and she is beginning to creep along on furniture, especially along her crib, where she feels most comfortable. She is fearful of falling and tentative about creeping. She doesn’t do it without prompting generally. When she is standing and I try to help her “stomp” her feet up and down, it is easy to raise the right one but the left feels glued to the floor. She creeps more easily toward the right–it is very hard to get her to creep toward the left. She gets frustrated and doesn’t even want to try to move toward the left. She puts most of her weight on that side and it is hard for her to shift in order to move that leg.

Maggie's pants are all ruined from constant scooting. The dirt on these pants came from a tire shop, not my floor ;-)

Maggie’s pants are all ruined from constant scooting. The dirt on these pants came from a tire shop, not my floor 😉

Fine Motor: I believe she can pick up a piece of string or ribbon with finger and thumb–we aren’t doing that often as a rule…but I think she has found the odd string or thread and picked it up if I recall. She can pick up a crumb or cheerio with tips of thumb and finger, put a small toy down without dropping it and remove her hand from the toy, pick up a cheerio with finger tip and thumb tip without resting her hand on the table…she can help turn the pages of a book, but she often doesn’t care to–she only shows occasional, emerging interest in books. Oftentimes she could take ’em or leave ’em. She sometimes throws a ball with a forward arm motion–and sometimes just drops the ball, so this is emerging. When she was tested in January she was 3 months delayed for fine motor–and when she met with the OT again in March, she was still 3 months delayed. That is actually really good, considering she is much more delayed for Gross Motor and speech than for fine motor.

We are still working on learning to crawl.

We are still working on learning to crawl.

Problem Solving: While holding a small toy in each hand she claps the toys together. If I hide a small toy under a cloth she will look for it and find it. If I put a small toy into a box she will copy by putting in a toy. She can drop two small toys, one after the other, into a container like a box. In fact, when she was evaluated in January–two months ago–she could put small blocks into a mini M&M tube, which was quite good.

At the adoption clinic in May.

At the adoption clinic in May.

She also did her first scribble on paper with a pen on March 17 when she had her first appointment with the Occupational Therapist. Emerging skill: trying to get to a cheerio or crumb inside a clear bottle.

With mommy and big brother on field day, May 2014

With mommy and big brother on field day, May 2014

Personal-Social: When I hold out my hand and ask for a toy she will offer it, even though sometimes she doesn’t let go. When I dress her, she pushes her arm through the sleeve once I start her arm in the hole of the sleeve. When I hold out my hand and ask for a toy she will put the toy in my hand–if she wants to. Sometimes she acts as if she will give it to me and then changes her mind and scoots away with it. She can roll or throw a ball back and forth. Emerging skills: She is just starting to play with a doll or hold/hug a stuffed animal. This is a new skill as of this week. Up until now she has had no tolerance for soft toys like stuffed animals and dolls. She does not yet lift her foot when I am putting on her pants, socks, or shoes, but I typically have her laying down on a changing table for this, since she doesn’t stand on her own yet, so I don’t really expect those skills yet.

The physical therapist suggested letting her walk holding a hula hoop so she has a sense of stability but has to rely mostly on herself. She tried it once, but afterward she refused to do it again--she just lowers herself to the ground and refuses to budge.

The physical therapist at the adoption clinic suggested letting her walk holding a hula hoop so she has a sense of stability but has to rely mostly on herself.

She tried it once, but afterward she refused to do it again--she just lowers herself to the ground and refuses to budge.

She tried it once, but afterward she refused to do it again–she just lowers herself to the ground and refuses to budge.

Other notes: Maggie is responding well to her therapists. She likes therapy and flirts with her therapists, trying to court their attention and approval. I feel fine about that from a bonding standpoint, as she has been home 7 months at this point and she is securely attached.

Learning to play while standing

Learning to play while standing

Every time we have therapy she gets stronger and learns more about what her body can do. She loves to practice all her new skills again and again. She is sleeping really well, and I can lay her down wide awake at night and she goes right to sleep without any fuss and sleeps all night. The same is true at nap time.

Maggie's hair is getting so long and she has silly bed head when she wakes up.

Maggie’s hair is getting so long and she has silly bed head when she wakes up.

She is starting to stand up for longer periods of time to play at a low table. She can occasionally move from one stable object to another using her hands and then shifting her weight. Sometimes she gets up on her knees as if she will crawl, but still does not attempt to do actually go anywhere. She also sometimes gets up on her feet, in a “bear crawl” position–hands and feet on the floor. She doesn’t push up high enough to move this way, though her physical therapist thinks she may start bear walking instead of crawling.

Palate surgery: what we are facing

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Maggie’s cleft palate will be repaired on Tuesday, May 27th at UAB in Birmingham. Her surgeon says any cleft surgeon would call this photo of her “intimidating”. Zoom in on the photo if you want a good look at just how wide her cleft palate is.

We have every confidence in Dr. Ray and, more importantly, in our God, Who heals and sustains. But we are also aware that Maggie’s cleft is “challenging” (again, per Dr. Ray).

A wide cleft would be anything 10 cm or larger. Maggie’s cleft is about 16 cm. wide. The biggest concern is that Maggie will develop a fistula (a hole in the palate that develops post-surgery). We chose Dr. Ray for many reasons, but a major factor was that his success rate is so high.

Maggie cl surgery 040Maggie February 2014

We are amazed and have so much gratitude and awe for the skilled man who did such a phenomenal job on Maggie’s lip repair.

Nonetheless, he wants us to be aware that she is a prime candidate for developing a fistula because her cleft is just. that. wide.

Dr. Ray has several different techniques in his arsenal that he can use to close her palate. In most cases he can choose one or two of them. In Maggie’s case he will likely need to use every single skill in his toolbox to get that wide gap closed.

He believes he can do it. And so do we. But it won’t be easy and we are asking you to pray for her, that God will guide the surgeon’s hands and mind and that He will ordain success and no further palate surgery for little Mags.

mags park may 2014

 

 

Physical Therapy at the Park

Maggie finally learned to crawl--through a tunnel at the park!

Maggie finally learned to crawl–through a tunnel at the park!

May 2014

I had an idea that perhaps we could teach Maggie to crawl by taking her to the tunnels at the park. And it worked! The tunnels there are too narrow for her to swing her legs around so she can’t sit up and scoot. The only way to move forward is to actually crawl.

The first time I tried this we had someone at each end of the tunnel, coaxing her along. It took about 20 minutes for her to crawl the length of the tunnel the first time, on May 15th. Afterward, she was proud but exhausted.

By May 19th she could crawl the length of the tunnel in about 5 minutes, and had the endurance to do it more than once.

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I asked her physical therapist to meet me at the park to show me some of the other things I could be doing with her there.

Holding herself upright in a swing is good for developing her stomach muscles.

Holding herself upright in a swing is good for developing her stomach muscles.

Making this bouncy chair move is also good for her abs.

Making this bouncy chair move is also good for her abs.

We worked a lot on climbing stairs and learning to slide.

We worked a lot on climbing stairs and learning to slide.

Keeping her balance with these swinging platforms is fun.

Keeping her balance with these swinging platforms is fun.

 

 

Six month update

Gotcha Day

Gotcha Day

We met Maggie on September 16, 2013, six months ago today. She was 13 months old and had very little strength and few skills aside from rolling over and sitting up. She couldn’t bear weight on her legs or her knees, couldn’t grasp a piece of food in her hand, and couldn’t find her own mouth to feed herself. She slept a lot and was silent most of the time.

It is incredible to reflect on how much she has changed in every way–physically, cognitively, emotionally, and inter-personally. When I look back on the photos of her first days with us I don’t see the same sparkle in her eyes or the joyful exuberance toward life that she displays today. But she was sweet and cheerful, gentle and smart–those things have not changed.

She is proud of herself!

She is proud of herself!

A friend told me once that it would be such a waste if she were still languishing in a Chinese orphanage, and I couldn’t agree more. She has so much personality, so much potential, so much value–what a blessing it has been to help her discover that!

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A lot has happened since I posted her 5 month update. I need to try and find more time to post, as she is changing so quickly now–but therein lies the difficulty! She is getting busier and I find less time to write.

Celebrating Chinese New Year, 2/1/14

Celebrating Chinese New Year, 2/1/14

Gross Motor:

Maggie has been meeting with the physical therapist for three weeks now. Every time we see the PT Maggie shows that she has made progress, and she grows by leaps and bounds during each PT session. The PT shows her what her body can do, and she gains confidence and wants to try out her new skills. She is easily pulling up to stand from a bench seating position now–she likes to sit on a little chair that she has and pull up using the slats on her bed.

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She is also able to get up from flat on the floor, though that is a little harder. Sometimes it is hard to get her feet under her and she pulls up onto her knees instead. This is progress for her, though, as six months ago she was unwilling to bear any weight on her knees without crying. Now she enjoys sitting on her knees and can often be found getting into the crawling position all on her own (although she still is not crawling!)

Maggie is the fastest little bottom scooter you ever saw. She feels she has no need for crawling since she can get everywhere she cares to go at lightning speed by scooting along on her rear end.

Walking with big brother, 3/13/14

Walking with big brother, 3/13/14

She is starting to hold hands and take steps and now that she knows how to do that she wants to practice all the time. Whenever I go to put her down she straightens her legs to try and force me to set her down in a standing position rather than a seated one. Her gait is rather robotic as she doesn’t bend her knees much. She is starting to creep a little, when prompted, using furniture to move a little bit further to reach a desired toy. She is somewhat fearful of falling so she doesn’t initiate creeping on her own yet, but she grows bolder every day.

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She can maintain a standing position without holding on to anything if she is able to lean against something (either a wall or a chair behind her or a drawer or table in front of her). She forgets to hang on sometimes when she gets busy playing.

at the park 3/10/14

at the park 3/10/14

She has learned to put a ball on her little tee and hit it off with a bat. Whenever she does this she puffs up her chest, so proud, and looks to see who is watching.

Growth:

Maggie has put on an incredible six pounds in the past six months.

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Speech

Maggie has gotten much more comfortable pursing her lips, and often says “mmmm” when something tastes good or she wants something. She still coughs to indicate that she wants a drink, but I am trying to teach her a sign for “thirsty”. She gives “high five” when prompted, and responds to many simple commands even when we make them without gestures. She is aware when we are talking about her and she perks up and pays attention. She says “mama” and this week she said “uh oh” and “hey” (a common Southern greeting). She has many ways of making her will known even though she is unable to express it. She likes to give me things so she takes my hand, opens my palm and places the object in my hand, for example. When she couldn’t find her baseball tee this week she grabbed the bat and ball and held them out to me so I would know she wanted me to find her tee.

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One thing we have been working on for speech is getting her to be less sensitive in her mouth and face. Initially she would immediately brush my hand away any time I touched her face. She also never mouthed anything and did not want anything aside from food in her mouth. She was also unwilling to take a sippy cup.

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Now she has become more tolerant of me touching her face, and she enjoys putting things in her mouth. The speech therapist gave me some tools to help desensitize her mouth–at first (2 1/2 months ago) we had to work on getting her to let them touch her lips, but now she will hold them in her mouth for several minutes. She is putting more things in her mouth, which is a good thing–she has to go through the stages she missed as a little baby.

She has started indicating that she wants tastes of our drinks and this week I gave her a sippy cup and within a couple minutes she had learned how to drink from it all by herself. We will keep her on the bottle, too, until after her palate surgery in May. Maggie is babbling a lot more, and has gotten so noisy that she can’t stay in the church service after the singing ends. For the first few months she could be silent for hours on end, but now she makes her presence known.

She has also gotten two more new teeth this month, both on bottom.

Learning to drink from a sippy cup, 3/13/14

Learning to drink from a sippy cup, 3/13/14

Fine Motor skills:

Maggie will have her first appointment with the occupational therapist on Monday. It took a long time to get in with the therapist, and she was only approved for meetings once a month since she isn’t very delayed in her fine motor skills. She is getting better at doing shape sorters and puzzles, but she still has a ways to go.

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When we went to the beach a couple weeks ago she wasn’t sure what to think of the sand, but within a couple days she was digging with her shovel.

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Emotions and bonding:

We have had a much better month with Maggie’s sleeping. Most nights she doesn’t wake up, and when she does it is usually only for about 15 seconds and then she falls back to sleep. When we went to the beach a couple weeks ago she was able to nap and sleep in a new environment with no trouble. Usually any change will upset her schedule for a few days but that trip didn’t bother her a bit.

Wake up, sleeping beauty

Wake up, sleeping beauty

She is also starting to relax on my chest and shoulder when she is tired or when she is crying. She is finding comfort from me and lets me soothe her.  She did this for the first time a month ago but now it is her regular habit. It has been over a month since she fought to get away from me when she was crying.

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Other changes and more photos:

Some changes are hard to quantify within a specific skill set, but they are important none-the-less. Maggie is more willing to touch soft things, like stuffed animals. She is starting to show interest in books, and has learned how to turn pages. She allows her sister to hold her hand, and reaches out to be held for a few moments by special babysitters and Grandma. She has started going to the nursery at church for the past few Sundays and she is doing very well. She has been willing to happily play, but she is excited when mommy comes back.

Maggie's favorite thing at the beach was the strong wind. She found it exciting!

Maggie’s favorite thing at the beach was the strong wind. She finds it exciting!

Maggie still displays amazing flexibility and still sometimes sits with her legs wide apart, but she is gaining lots more tone and strength in her legs, hips, and stomach muscles. She is getting stronger and gaining endurance.

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Maggie loves her brothers and her sister. She has a lot of fun in our busy, noisy household.

Aboard the USS Alabama with most of her siblings

Aboard the USS Alabama with most of her siblings

Maggie was quiet enough to go birding with the boys and I on our recent vacation. She fits right in to our family–her older siblings learned to be quiet and come along for the ride whenever big brothers find a bird they need to chase down for their life lists!

Birding with mommy

Birding with mommy

She loves playing chasing games with her big sister and she enjoys being toted around by the boys.

Hanging out with big bro

Hanging out eating graham crackers with big bro

Five months with Maggie

Maggie February 2014

This week marked 20 weeks–or 5 months–since our Gotcha day.

When I took Maggie to Birmingham at the beginning of January the occupational and speech therapists were concerned that she wasn’t progressing quickly enough. It was recommended that it was time for us to initiate speech, occupational, and physical therapy here in our local community now that attachment is well established.

Honestly, it has taken about a month just to get all that in place. I started making phone calls on January 3rd but it seems like the wheels turn very slowly, particularly because we are using a government-subsidized program for some of her therapies. By going through the Families First/Babies Can’t Wait program I can use therapists who will come to our home and thereby avoid having to drive an hour each way for Maggie’s therapies since there are no other therapists in our area that specialize in physical or occupational therapy for children. Our particular program does not have funding for speech therapy, but I was able to find a wonderful local speech therapist on my own who can work with Maggie.

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Gross Motor

Maggie has finally had all her evaluations and we were very encouraged by how everything went. She is significantly delayed in her gross motor skills so her primary work will be with the physical therapist. The PT encouraged me that I am already doing a lot of the things she will also do with Maggie, such as working with her using the exercise ball. She bounces up and down, and I roll the ball from side to side so she can re-balance herself, and since January we have also added an exercise where I lay her on her tummy and roll her forward while she puts her hands down to catch herself. Since she never learned to crawl it is important that she get that reflex for catching herself so that once she starts to walk she will have a self-defense mechanism in case of falls.

I am continuing to help her work on pulling up to stand from a “bench seating” position–I sit cross legged and she sits on my ankles, which gives her some height so she can get her legs under her. In this way she can easily pull up to stand, though she cannot do it from a seated on the floor position. We are supporting her as she plays while standing at a low table so she strengthens her legs. She can do this pretty independently, and can even let go with one hand while standing, but someone needs to be right behind her so she doesn’t fall as she gets tired easily.

I still put her on her knees on the floor and on the ball, and she still wears her “hip helper” pants every day, but ever since she learned how to scoot on her bottom she has shown no interest at all in crawling. Not that she ever showed interest before….Anyway, by the time I could get her to support her weight on her knees for any length of time without crying she had learned to bottom scoot, and now she has no motivation to crawl.

Sometimes Maggie tries out a crawling position but she never goes anywhere with it.

Crawling is very important for her brain, so she will need to learn how to do it but at this point it is most likely not going to happen until AFTER she learns to walk. Sometimes she bends her knees on her own and leans forward on her hands, but she never gets beyond that position by herself, and when we try to help her she just sits back up as soon as she can and starts scooting again.

Her current goals are to strengthen her core, to learn how to pull up to stand, and to progress from there to creeping and walking.

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Fine Motor

Maggie did really well on her fine motor skills. She has turned a corner since early January in many ways, and although she didn’t appear to be progressing very well when she was seen on January 2nd by the time she was seen again at the end of the month she had made some strides. The occupational therapist will only be meeting with us once a month to coach me on how to work with her and help us stay on track with her goals. When we saw the OT in early January she had just learned how to put a ball into a basketball hoop. Now she has learned how to put large plastic coins into her pink piggy bank, and can put shapes in a shape sorter with some help (we often need to cover the incorrect holes and she can take it from there). She was able to put some small dice-sized cubes into a small round mini- M&M container, and although she could not put pegs into holes she had the concept and knew what she needed to do. She is very smart and we can see the wheels turning in her mind, but her hands won’t always cooperate. Nonetheless, she only displayed a 3 month delay when she was evaluated recently by the occupational therapist, which shows incredible progress considering she was not able to grasp anything small like a piece of food when we got her at 13 months. We are working hard with her every day and I am very proud of her progress! She is proud of herself, too.

Speech

Maggie had a full evaluation from our local speech therapist and she believes Maggie does not need speech therapy regularly at this time. She has many new speech related skills emerging and the therapist said we are doing all the things she would do anyway, and Maggie is more comfortable working with us. She is not capable of making any consonant sounds other than “m” or “n” since her palate is still unrepaired. Now that her lip has been repaired we were hoping to hear those sounds, but as of her 3 week post-op appointment on January 2nd we had not.  In fact, at that time she barely made any sounds at all. I was worried about her because she spent most of the day very silent.

Fast forward to now and she is making much more sound every day. She is finding her voice and enjoying using it. She has learned to say “mama”, and often she seems to say it purposefully (to call me). She also started saying “mmmmm” today. I was blowing on a noise maker and she pursed her lips and said “mmmm” several times to get me to repeat what I was doing, as if to say “use your lips like that again, mommy!”

She still occasionally makes gutteral noises but those are falling away. When we first got her those were the only sounds she made to communicate.

Maggie has learned the signs for “all done” and “more” and uses them consistently when eating, or when she likes what we are doing (or when she doesn’t). We haven’t been very successful teaching her any other signs, so one of our goals is to be more consistent about learning and teaching new signs. She definitely has her own way of communicating through gestures, vocal inflections, clapping her hands, kicking her feet, waving her arms, and the like–but we want to teach her more purposeful communication. She is definitely smart enough if we can just be more consistent about it.

Other speech breakthroughs this past month include that Maggie is starting to put more things in her mouth. I have not had to child proof for her since she has not ever wanted to put anything in her mouth. About 3 weeks ago she put a playing card in her mouth for the first time and held it between her clenched teeth. She held her hand beneath it, as if afraid that it would fall, and she was delighted that it didn’t. Since that time she has started putting more things in her mouth–tentatively. The speech therapist at UAB gave me some oral stimulation tools that vibrate or which have nubby textures and she is now willing to put those in her mouth for longer and longer stints. When we first got those on January 2nd she wouldn’t let me bring them near her lips and now she will open her mouth and put them in herself when prompted. Last night she opened her mouth willingly to let me brush her teeth–another breakthrough, as usually she fights it.

This week she learned to take bites off a bagel, and then off a cracker–up until now she has never been able to take a bite. All her food has to be torn into bite sized pieces as she has been unwilling to bite down on anything. These are all wonderful strides, and since there are so many developments and they are happening so close together it really seems like she is picking up steam and starting to turn a corner. She is making great progress in gross motor, fine motor, and speech all at the same time, so she must be having a “growth spurt”. It is fun to see things starting to click for her!

The speech therapist was also happy that she is eating so well and she doesn’t show any major sensory issues. She is willing to lay on her tummy (not for long but she doesn’t hate it, either), and she will eat foods of all textures. She doesn’t mind when her hands or face get dirty while eating, and she likes her bath. It is great that she doesn’t have any truly major sensory issues. The only one we are still dealing with is her dislike of soft textures, specifically of stuffed animals and dolls or any soft toys. She also doesn’t like to have her cheek stroked–she is defensive about having her face touched. We are working on desensitizing her in both of those areas and she is showing some baby steps of progress there, too. My precious girl! We all delight in her.

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After five months she will finally lay her head on my shoulder and allow me to comfort her at night.

Sleep issues

We continue to have sleep issues, especially when anything happens to upset her delicate night time balance. She finally had settled into a routine about three months after we brought her home. Then she had her surgery. It took about three weeks to get past the sleep issues that surgery brought about. Things were back to normal finally where she was going to bed at a decent hour and sleeping all night–and then she got vaccinated. She is behind on her shots and so last week she went in and got started on catching up. That threw her off again for about 3 nights. When she has trouble she either wakes up about midnight and often stays awake for two or three hours, or else she won’t settle down initially and it takes 2 or 3 hours to get her to go to bed. Her normal nights are bedtime about 8:30 and she sleeps all night, but when she is struggling it might take until midnight to get her to bed, or she may go to bed and wake up at midnight and be up until 3.

Her cry at night is so different than her daytime cry. It is very mournful and heart wrenching. Sometimes she doesn’t even seem to be fully awake. Any time I have had to go in to her in the night she fights me tooth and nail if I try to comfort and soothe her. She doesn’t like to be rocked and she kicks and pushes and fights to get away from me. Yet if I lay her back down she gets even more agitated and wails and howls until I pick her up again. It is beyond anything I have ever experienced to deal with a child who cannot be comforted, and who doesn’t find comfort from mommy. And yet by her reaction if anyone else dares to try–or if I dare to lay her down–I can only assume she does receive comfort from me even if she can’t express it and she wants to fight it. For me, it is incredibly frustrating to want to comfort her but to be unable to. I am trying to rock her and soothe her while she scratches and stiffens her body trying to get away. She often seems to be awake during these times, but it is a possibility that she is actually experiencing night terrors when this happens.

I learned this week from another mother who adopted from Maggie’s orphanage that she was told the nannies did not remain in the room at night in the orphanage. I can only imagine the number of nights Maggie spent crying, surrounded by other crying babies. It is heart breaking. No wonder her cry is so mournful at night. Even though she surely doesn’t remember that I am certain it is the reason why she struggles so much at night.

This week we experienced a breakthrough. She finally had a night where she was willing to lay on my shoulder, sniffling and sobbing but eventually calming and settling down to sleep. It has taken her 5 months to be willing to lay her head on my shoulder and let me comfort her and rock her during a “night terror” episode. What a sweet victory, and I give praise to God for answering my prayers.