A Sense of Relief

It's 140 am, and I'm sitting at my keyboard typing, because Brianna is having one of her fortunately now rare difficult nights. She has been difficult to settle tonight, not able to stop moving, and waking as soon as laid down once she is awake. After three attempts to lay her in her crib, she is sitting on the couch, watching a little baby Einstein, "talking" to herself and hopefully "resetting" her sleep switch.

We had a very encouraging doctor's appointment with her today. I've been struggling over the last few months, trying to figure out how to get more resources for her. I get very frustrated when I see children with milder forms of Autism get daily therapies, and Brianna only gets 2-3 physical therapy and 2 occupational therapies A MONTH. I don't understand how a child with as severe a disability as she has has such limited services, while children her age who are running and jumping get therapy every day. I understand that they are very different disorders, and that they have unique needs, but nonetheless, it frustrates me.

On top of that, I just felt like none of her doctors cared anymore to try to figure out how to help her. I felt like she had kind of been written off, and everyone had taken a casual "let's wait and see" kind of mentality. When we went and saw the head developmental pediatritian, and I expressed my concern that I felt like her resources were limited because no one had a diagnosis for her, and asked about cerebral palsy, he brushed it off, saying that CP was an overused diagnosis, and that she didn't show spastic (stiff) muscles and her MRI was clear, so that he didn't think she had CP. He said that she would end up having a diagnosis, and when she turned three she'd likely be labeled mentally retarded or as having a developmental disability, which would get her the resources she needed through the system. At the time I was a little floored, but the longer I thought about it, I just got ANGRY. So we were just supposed to sit back and wait for the next year and a half, and just accept that she was probably just mentally retarded and that's that?! Because you look at this chart and she's x percentage behind on her abilities, and there's no attempt to look into her unique characteristics, just where she stands on some evaluation chart? Pardon my language, and I'm someone who never swears, but that is just BULLSHIT. And for a developmental pediatrician not to understand that cerebral palsy has different presentations, and not every person with cerebral palsy - by the CLINICAL definition, has spastic muscle tone, that's just ridiculous.

So I walked into the appointment this morning, my mother at my side, ready to do battle. I was worried, because I really didn't know what I would do if yet another doctor shrugged off my concerns. But I had my list of frustrations and concerns at the ready.

From the beginning, my heart was soothed. The doctor came to us in the waiting room, and as we walked to his office, he observed Brianna sitting in her stroller, soaking in the way that she sat and moved. As we sat in his office, he immediately began talking to us about our concerns. We talked about her feeding tube and her growth. He acknowledged my frustrations with my inability to get people to call me back, having to repeat my attempts to talk to people, rather then anyone returning my phone calls, and he apologized for my experience.

Then we began to talk about Brianna's personal characteristics. Specifically, her movements. First, he acknowleged my intelligence and that I seemed to understand a great deal about what we were talking about. And rather than patronize me with stupid analogies (one thing I've found is that doctors love to use analogies to explain scientific concepts, even after I tell them that I understand the terminology and they don't need to "simplify" it for me, they don't seem to think that a simple stay-at-home mother could possibly understand what they're talking about, without comparing it to some everyday object or concept), he just accepted when I told him that I understood the term, and he talked to me like an intelligent person.

We talked about Brianna's increasing uncontrolled movements. He asked me if I'd describe them as "purposeless" and I agreed. The more excited she gets - the less she has control over her body. Her head moves from side to side, her eyes squint, her arms flail, or she brings them in, "hugging" herself. She is rather still. Yet she has relaxed moments where she is very much in control of what she is doing, and is very careful and precise in her movements. It's something I've been trying to explain to doctors for months, and they haven't seemed to see what I was talking about. We also talked about the possiblity of seizures, because he said that he thought that she was periodically "checking out" even while he was observing her. She would go from very intent on observing, to not seeming to engage with her surroundings.

When I told him that her therapists believe that she might have cerebral palsy, he agreed that it seemed a likely possibility. And then HE brought up athetoid cerebral palsy, and knew exactly what I was talking about - and agreed that it appeared she had that form. He said that he was going to give her a preliminary label of CP, because he knew it would help other doctors understand what unique treatments she needed (such as her GI doctor) and not just look at her specific symptom without taking in the bigger picture. He understood that people were more willing to open up resources with giving her a diagnosis - without my having to talk about it.

We continued to discuss several things, and he immediately scheduled our next appointment. He said that he was going to put in several referrals, and make sure that she was scheduled for an EEG, and a barium swallow study (which was supposed to have been ordered TWO MONTHS ago). And he said he wanted her feeds to increase, because of her weight gain, and he would call in a couple days to see how she was handling it. And that if we weren't called about the referrals within a week, that we were to call him.

FINALLY, I felt like someone was taking us, taking HER seriously. He understood the sense of urgency, and that no one was taking care of coordinating her care, and he took responsibility for it. I walked out of the appointment with a huge sense of relief.

And that isn't it. About four hours later he called. He said that he had been pouring over her records, and that he was surprised at the number of doctors she had seen. He talked about things that were in her chart from the weeks after she was born - like when I called the on-call doctor over the fact that she hadn't pooped for almost 2 weeks after she left the hospital - and they told me not to be concerned (they should've been concerned). He was concerned about some different elevated labs in her chart - repeated labs that were elevated (lactase, pyruvate, and calcium), that no one knew what to do with. He emailed an endocronologist that he knew (he described him as a "super-nerd" and that when he was stumped, he went on to talk to the super-nerds). Rather than just shrugging it off as something that he didn't know why it was wrong, so it must not be important, he tried to find some answers.

He told me that he saw that we were getting to the point of "oh well". Not US, but that the doctors were just shrugging their shoulders. "oh well, she's not growing" "oh well, these are abnormal, but I don't know why" "oh well, she's already seen me, but I didn't see anything I could do"

Oh well.

Oh well.

Oh well.

She's just a child, who cares if we can't figure out what's wrong. We know how to deal with child x who has autism, let's just take care of the things we understand. She should just wait and see what happens, let's not refer her off to someone or someplace that might help.

But finally, a doctor who cares. Someone who wants to help her. Someone who wants to help us to get her to reach her fullest potential. Someone who accepts that he doesn't know everything, and that there are people out there who might know something that he doesn't, so not to just let it rest.

Brianna's Story So Far

When our son was about 8 months old, we decided that we were okay with the idea of conceiving another child, if that was what God was going to bless us with. My husband was due to deploy in another six months, and we knew if we waited until he returned that our son would be at least three years old before we had another, and we didn't want our first two children spaced out taht much. A little over two months later we found out we were blessed with our second child. We didn't know exactly when we conceived, since my period hadn't returned and I wasn't paying close attention, but I estimated that this baby was due at the end of September or in October.

When I was about 5/6 months pregnant my sister (whom I was living with at the time) and I both noticed I wasn't as big as I would've expected to be. I was still measuring within a couple weeks of my estimated due date, but always on the small side. When I went in for my 35 week appointment, however, I was measuring almost 6 weeks behind. We did a growth scan and sure enough, she was measuring at about 30 weeks, when I was estimated about 35 weeks. They were scheduling a 2nd scan on September 11th (her due date was the 24th) to see if she was growing and would induce on that day if she was not, however, she came on her own on August 30th - I barely made it to the hospital, literally climbed hands and knees on the the table as the nurse took down my shorts when she came out, with barely a push, in her amniotic sac. I was still in my sandals.

She was 4 lb 12.5 oz and scored 9 on the apgar, seemingly perfectly healthy.




I was concerned at the hospital that she was having problems nursing. She latched ok, although her mouth was really tiny and I have very large nipples. But she wasn't able to nurse long before she seemed to tire out, and she didn't seem to suck well. I asked for the LC, and when I gave her my concerns, emphasizing that she was a preemie, she basically brushed me off. She said I had successfully nursed another baby and shouldn't have a problem with this one. She said that new babies were tired and she'd be fine when she got home. I accepted this advice. We were discharged 2 days after she was born.

She seemed very healthy. Very little jaundice. Gained weight on the low end of normal, but still okay. I called the doctor's office after ten days because she hadn't passed a bowel movement except for the one small meconium movement at the hospital. They said it was okay, she was breastfeeding, it was normal to go so long (which is true, but I've since found out that breastfed babies should NOT go so long without pooping in the first three weeks, only after the 3 week mark).

At three months she seemed to be gaining weight okay, she was 9lbs 8oz, up from her lowest weight of 4lb 8oz, so doing quite well. However, she was a bit slow on her milestones, and had very little to no head control. They weren't terribly worried because she was a preemie, and they expected her to be a little behind.

As the next two months progressed we started to get more worried. She didn't have any head control, couldn't sit with any kind of support. And her head was shaped very oddly. Very narrow and long.

We saw the doctor when she was almost 5 months old. She had gained only a pound in those two months. The doctor referred her to developmental pediatrics and told us she thought that she might have craniosynostosis (one of the sutures on her head closed early). We got a referral to a neurosurgeon and plastic surgeon and saw them on the 29th. She did indeed have craniosynostosis and was immediately scheduled for surgery. On the 3rd of February the part of her skull that had fused early was removed, and she was fitted for a helmet to help her head grow out correctly.




From this point on, things began to get crazy. We saw yet another pediatritian (yay military health care) and this one just couldn't stop going on about everything I was doing wrong. He lectured me for 30 minutes about vaccinations (which I made very clear that I wasn't interested in doing) and then went on about how she needed to start solids (she was barely 6 months old) because she was failure to thrive and I couldn't give her enough milk. I let him know that my supply was not a problem. He scoffed. He said she was too old to supplement with formula and I just needed to push solids. I told him that she had a major gag reflex and spit up anytime anything but my breast was in her mouth. I told him that early intervention recommended she see a nutritionist. He said that a nutritionist wouldn't do her any good because she was breastfed. He basically told me that there was nothing I could do. A very frustrating appointment.

Soon thereafter I had another appointment with the developmental pediatritian. I took my sister with me to this one. Yet another doctor seemed stumped as to what I should do to help her gain weight since she couldn’t eat solids and couldn’t take a bottle. He referred us to the feeding team and a neurologist. On our way out my sister insisted we go see the lactation consultant at the hospital. On watching us nurse, she told me it looked like she had a shallow latch, and a weak suck, but that she seemed to be able to be getting something. She wasn’t entirely helpful and just showed me how to use an SNS. She said to try to pump every 3 hours to boost my supply. No suggestions on supplements or anything. She asked about Brianna’s nursing habits and when I mentioned that we coslept she FLIPPED OUT. She started going off about how unsafe it was and how she’s morally bound to tell us that we shouldn’t cosleep. I told her that we coslept safely and that I would continue to do so. Again, I walked away frustrated from someone who should’ve helped me.

My sister got me some fenugreek and I began to take it. Right away I definitely saw a change in my supply. However, it didn’t help. The only reason my supply dropped is because my daughter wasn’t able to demand enough. Every time I pumped I got at least 4 ounces. Yet even with the SNS, my daughter wasn’t able to take much in, not even a ½ ounce from the SNS because her suck was so weak.

From here on out we began to see many doctors. Neurologist, developmental pediatrician, geneticist. Lots of testing. MRIs, genetic testing, blood testing, on and on. All normal. She wasn't gaining weight, was growing slowly, and her development was extremely behind. I met with the feeding team and their only solution was to push solids. She was 9 months and we had just begun being able to feed her. She was still gagging a bit and couldn’t eat much at a sitting, which they witnessed at the appointment. But the solution was to just keep up with the solids. They told me to nurse less, and the child psychologist said that it was important to her mental and social development that we work hard on her getting solids NOW. I disregarded much of this because I knew that slowing down nursing was not the answer (I purely believe in demand nursing, when she wants to nurse, she nurses), and I couldn’t force her to eat any more than she was able to eat.

At this point we met with the Neurologist. He voiced a concern that she may have reflux and prescribed prevacid. It seemed to help some things a little bit, but her weight did not improve. Finally, around a year we finally got a referral to see the GI doctor.

At 12 months old Brianna still did not have complete head control. She couldn't lift her head past 45 degrees when on her tummy, and was still very wobbly when placed in a seated position. She was 13 pounds.

My frustration continued to mount. No one had answers. Test after test showed no answers. And she stopped gaining weight. She was stuck between 13 and 14 pounds. When the GI doctor told us to alternate breastfeeding and solids, and to add oil and supplements to her babyfood, she actually lost 4 ounces in 2 weeks. We increased her prevacid to the max dose and the GI doctor mentioned putting her on a long-term regime of Reglan.

Finally, at 16 months I put my foot down with the GI doctor. We wanted a scope done. I would NOT put her on Reglan, and we were ready to go forward with a feeding tube. At this point the feeding tube had been mentioned in passing by a couple doctors, but NO ONE had recommended this as a course of action. No one. She was 16 months and 14 pounds. Her scope results came in with no indication of allergies and very little damage to the esophagus, showing mild reflux. We met with the surgeon and I said we were ready to go forward with the feeding tube and fundoplication (surgery for reflux).

She met with a new developmental pediatritian (the head of the department) at the end of January. When I asked about her possibly having cerebral palsy, he said that he didn’t think so because her MRI was normal and she was not spastic (having high muscle tone). He looked at her development. At her 15 month evaluation she tested at 2 months for expressive language, 4 months for receptive language, 4 months for fine motor, 6 months for gross motor, and between 6 and 9 months for cognitive. He said that she had global delays, and likely would be diagnosed with a developmental disability/mental retardation when she reached the age of 3. He said it wasn’t for sure, because children can make surprising gains in the first 3 years, which is why they don’t make the diagnosis of developmental disability before the age of three. But he said that children rarely made an improvement of more than 15%, which would still put her under the 70% disability level.

I walked away from this appointment with a lot of unease. I had known since she was seven months old that she was likely going to have some sort of disability that she would be dealing with throughout her life. But I’ve never really believed that she was lacking in intelligence. In the last couple months she had gained a lot of “spark”, showing a witty sense of humor, and a desire to do more than she was physically capable of. She had started making her own sort of conversational babble, though the only sounds she’s able to make are “ma” “na” and “la” sort of sounds. I believe this is because she has a lot of problems with the motor control in her mouth. She shows frustration because she isn’t able to “do” as much as she wants to. I really believed that her cognitive capability was much higher than we were able to measure. How does a 17 month old demonstrate her abilities if she’s physically unable to point, move to where she wants, or use language?

Brianna’s surgery was on February 5^th. It has been exactly 3 weeks and she has gained almost two pounds. It’s a bittersweet feeling. On one hand, I’m so happy that we found what her weight gain problem was, she just needed more food. On the other hand, I am angry and filled with sorrow that for FOURTEEN MONTHS, she has struggled to get barely enough to survive. I had so much milk to give her, and no way to get it into her. However, I really believe that by breastfeeding, she is so much healthier and stronger than she would’ve been if I had stopped breastfeeding her when her weight problems began. Despite all of her difficulties, she is an incredibly healthy and resilient little girl. With both surgeries she recovered so quickly that the surgeons expressed surprise at how quickly she healed and regained good spirits. Her therapists always comment on how quickly she learns and adapts to what they are teaching her. She has a remarkable spirit and love for life. And I believe that my breastmilk is why she is thriving DESPITE all the help we received from the doctors.

If I had fed her from a bottle from the beginning, might we have known sooner her difficulty in getting enough to grow? Yes, most likely. And this makes me SO angry. Why is it that doctors cannot believe a mother when she tells them that she makes enough milk, but her baby CAN NOT get enough to grow? Why is it the assumption that the failure is the mother to produce enough milk, even though her child was premature and had disabilities that should’ve made it obvious that she would have problems getting enough? Why did I have to PROVE to those doctors that I could put more in her in the form of solids, before they believe me. And even then it took them over SIX MONTHS to accept that she needed a feeding tube. And even then, I had to ASK THEM to put in the tube. How much longer would they have waited if I had just continued to follow their suggestions? How much more would Brianna have suffered?

I now see hope. When I told her therapists that the developmental pediatritian didn’t believe that she had CP, they looked disbelieving. I can tell that THEY believe she has CP. And since they work for United Cerebral Palsy, I’m inclined to put a lot of weight on that. Her therapists have recommended her for a couple special therapies, and she’s getting a consult to get some special adaptive toys to help her play.

Brianna has made incredible progress in the last three months. She has begun to make more sounds, trying to have “conversations” when everyone is talking around her. She’s still very quiet most of the time, but she’s incredibly observant, soaking in the environment. She’s become much more confident in sitting, and on her tummy. She wants to stand much of the time now, but needs a lot of help. I don’t know if she’ll crawl, since cognitively she wants to be UP with everyone, not down on the ground. But I believe that with some assistive equipment, she will be walking before her 2^nd birthday. The most notable improvement is in her interaction with everyone.

I’ve done some more research and I now believe that she has Athetoid or Diskenetic Cerebral Palsy. About 10-25% of individuals have this type of cerebral palsy. I found this description of Athetoid CP: The main characteristic of athetoid cerebral palsy is uncontrolled, slow, writhing movement of the limbs. Sometimes the muscles of the face, tongue and throat are affected, causing grimacing or drooling. Patients may also have dysarthria, a problem coordinating the muscle movements needed for speech. Uncontrolled movements often increase during periods of emotional stress and are not present while sleeping. Athetoid cerebral palsy sufferers often have a hard time maintaining posture which makes sitting or standing difficult. Additionally, people with athetoid cerebral palsy can have a hard time moving their hands to a certain spot or holding on to objects.

This sounds exactly like Brianna. I also found it interesting that individuals with Athetoid CP typically have above average intelligence. Something I have suspected of Brianna all along.

Could this just be a hopeful mother? Possibly. But a life with Cerebral Palsy is not an easy life. I don’t WISH this upon my daughter. She may never be able to walk well, she’ll always struggle with the uncontrolled motions, she may likely always have problems speaking. It will be frustrating for her, having the intelligence, but dealing with people who assume she does not. She will most likely need special equipment her entire life.

But I believe God has gifted her with a special spirit, and an incredible resiliency that she has already demonstrated in her young life. I believe that Brianna will use this disability and thrive, not in spite of it, but because of it. I believe that Brianna will be a testament to God’s grace and love that with God in our lives, we can rise above any circumstance and be happy and fulfilled, even when life gives us things that seem impossible to handle.

When life seems impossible to handle, when we're having a rough day, or have had little sleep, it's easy to ask God, "why". I often get questions on how I handle it, how I deal with it. People often say, "well, God doesn't give us more than we can handle".

The truth is, I DON'T believe that God doesn't give us more than we can handle. First, I don't believe God is "giving" us this difficult situation. The fact is that the evil and sorrow in the world isn't God testing us or giving us burdens, they're a product of a sinful world.

But I do believe that God allows things to happen that ARE more than we can handle. Because God doesn't want us to handle them. He wants us to realize that we CAN'T handle them on our own. The only way to get through rough waters is not to just survive them, but to live fully and allow these times to become a testament to His love. We need to realize that we NEED God, we can't do this on our own.

This is something that I have to remind myself of all the time. I HAVE been given more than I can handle. If it were just me, then I wouldn't be able to deal with this. But God never expects me to do it on my own. That is why He has blessed me with an amazing husband, a supportive family, and wonderful friends. But even if I didn't have them, I have my God. This is what gets me through the difficult days. I know that whatever happens, God will use this to make us stronger, and bring us closer to him.

God has given us this incredible gift in our daughter. She is not a burden, or a cross that I must bear. She is a precious gift. We have been given the great responsibility of raising her to be a glory to God.

I believe that God gives us all a special task, a calling in our lives. I've spent years searching and wondering where my talents lay, and how I should use my gifts. God has given me the answer, and a very special calling. The answer is Brianna.

Sunrise

Despite a very short night's sleep (Brianna didn't go to bed until midnight) I met up with some friends at 545 this morning to drive to Kaneohe Marine Corps Base (on the most eastern point of the island) to take pictures of the sunrise.

I had to take both children with me because Brant is working 12 hour shifts this weekend. =( They both did very well, sitting in the stroller and watching the waves. I brought a bunch of sand toys for Garin to play with, but he was afraid the waves were going to get him. We had gone to Ka'ena Point (the most northwestern part of the island) the week before and walked along the sand. Garin had gotten over his fear of waves enough to walk near the ocean. Unfortunately, the tide was coming in and we got surprised by a large wave, which splashed over Garin as I was grabbing him up. So all of our wave-fear progress was lost. But he seemed content to sit in the stroller with Brianna and watch us take pictures.

A Chameleon

No, I'm not being metaphorical, Garin actually saw a chameleon on our driveway (though he insisted it was an iguana) and ran to get his dad, who brought the camera. I thought it was some sort of strange horned lizard until I looked online of pictures of lizards in Hawaii, and sure enough, it's a perfect Jackson's chameleon. I never realized they had three horns on their head! But I thought these pictures were really cool and wanted to share them. He didn't seem to be a very good chameleon, he wasn't blending in to the tree very well. =)


Garin's "shooting" the chameleon

Brianna's Surgery

We went to the hospital on Friday morning for Brianna's surgery. Thankfully, Brant's parents were able to fly out on Thursday to give us a hand, staying with Garin and shuffling back and forth to the hospital because Brant had to work 12 hour shifts on Saturday and Sunday.

Her surgery was scheduled for 10:30, and we had to check in at 9:15. I was last able to nurse her around 5:45am. Of course, did we actually get in on time? Of course not. We were the 3rd surgery of the morning by that surgeon, and of course the first went long. The boy before Brianna was called in around 11am, so we finally went back around 12 to the OR, and they put her under the gas while in my arms around 1pm. She did remarkably well, considering that she had last eaten at 8 the night before and nursed at 5:45 in the morning, so it had been over 7 hours since she'd had anything to eat or drink. She only started getting really upset around 12:30. Such a trooper!

Her surgery took just under 2 hours. Everything went REALLY well, and she had no complications. We went in to the recovery room around 3:30. She was mostly sleeping off the anesthesia, coming in and out every ten minutes or so with weak cries. After about an hour in recovery, she moved up to the pediatric ward. The first evening/night went well. She was able to be soothed pretty easily with a pacifier, dipped in sugar water. She wasn't able to eat or drink anything while her stomach recovered, but she was still pretty out of it from the anesthesia and the morphine.

The next day she started to become more of herself, and switched to a less powerful pain killer. We were able to start tube feedings and breastfeeding that afternoon, and were told that as long as she tolerated the feedings well, she'd be released the next day. We were able to take a long walk around the hospital, enjoying the beautiful view from Tripler out onto the western part of the island, overlooking pearl harbor and the ocean, enjoying the refreshing evening breezes.

That evening wasn't so pleasant. She no longer was interested in the paci and wanted to nurse, which we did. However, with the continuous tube feed going, her tummy got a little too full after she was woken up by a blood pressure check at midnight. She was extremely agitated, crying a lot, and difficult to soothe. And of course, being a hospital, there was no real comfortable place to nurse or hold her, no rocking chairs. Very frustrating - you think a pediatric ward would have a few rocking chairs...something I might think about donating to them in the near future. After using the tube to release some of the contents of her tummy, she settled down and went to sleep (by now, it was about 3 am). She woke up at 7, nursed, and fell back asleep watching sesame street, doing the same thing an hour later to a different PBS show. They told us that she would be released. We took a few more walks while waiting for the paperwork and finally left the hospital at about 1:45 pm, got home and watched the superbowl with grandma and grandpa.

She's recovering very well and seems to be almost back to her old self. She's a bit worn-out and not really interested in her baby food like she was, but otherwise in good spirits. Right now she's sitting on the couch with grandma, grandpa, and daddy, babbling softly.

Here are some pictures of her tube and the incisions where they put the scopes through (for the tube and the fundoplication).

The Feeding Tube...

So we met with the surgeon today and Brianna is FINALLY scheduled to get her feeding tube. February 5th is the big day. At the same time they will do a Nissen Fundoplication - where they wrap part of the stomach around the esophagus to help control her GERD.

It's scary, but we're ready for this. Brianna has gained less than four pounds in a year. It's been a frustrating process getting the medical professionals to figure out what needs to be done. I'm ready for the experience of nursing her and having her learn to eat solids to not be filled with the constant pressure to shove calories into her. Now the feeding tube can take care of the heavy work at night, and during the day she can enjoy nursing and eating yummy food (hopefully moving away from purees totally in the next six months).

So here's my little girl. Two weeks before her surgery. =)

The Trouble with Sleep

I'm chronically sleep deprived. Honestly, I don't think I've gotten more than 4 hours of sleep in a row in a year and a half. Maybe one fluke night of six hours.

You see, Brianna doesn't sleep. At least, that's how it feels sometimes. She definately does NOT go to sleep before 10pm. And then, if it's a good night, she'll wake up once or twice before seven. But Garin is awake at 6am on the DOT.

Bad nights. Well. I'd like to say they're few and far between. But they come and go every few days. We had TWO WEEKS where she didn't sleep for longer than an hour, and it took at least an hour to get her back to sleep.

We're testing and trying all sorts of different things. Sometimes they work, sometimes they don't. The weighted blanket seems to be helping a bit. She doesn't seem to need to be totally passed out any more when we lay her down, as long as we cover her with the weighted blanket. And it does seem to be helping her sleep longer - as long as her "other" issues aren't bothering her that night.

The problem is there are several things affecting her sleep, and it's hard "treating" them all at once. There's the sensory processing disorder issues (for which we got the weighted blanket). There's the reflux (sometimes the medicine helps, sometimes it doesn't) and I got a wedge to help elevate her, but it's not very soft, and she likes soft (see the sensory issues). And then there are nights when she has horrible gas, and she can't stop moving. This seems to be helped as long as we make sure she gets enough Mirolax earlier in the day. But sometimes not. And sometimes it's like her little brain just doesn't want to shut down. So another question to bring to the neurologist is the possibility that maybe she has some seizures going on. So I'm going to ask about an overnight EEG. We'll see how long they will deflect me on doing that. Although the neurologist seems to be quicker about testing for things than her other doctors.

We're FINALLY getting back in tomorrow with the ped GI doctor about getting her a scope and/or a barium study done. I'm hoping that will let us know what's really going on inside of her.

She's such a happy sweet girl during the day. People have such a hard time believing that she ever gives us a hard time. I tell them to swing by around midnight or nap time.

But here are some pictures of my sweet babies!





Garin built this all by himself, can you believe it? ;)




She's just so stinkin' cute!!




Garin went down to the mailbox with the keys and got the mail ALL BY HIMSELF! What a big boy!