More Equipment

Isaiah got his ventilator, which is used for a CPAP for him. The FDA has not approved CPAP machines for kids under age 7, so they use this fancy ventilator that has settings including the CPAP. It has a little humidifier attached to it, that heats up the water and then cools it. It is computerized and very fancy. I am on a huge learning curve trying to remember all the details for how it works.
We turned off all the alarms, except for the one for power (it has back up batteries) and when the water is empty. Unfortunately, the water only lasts about 8 hours maybe, at least that is what we found last night. So it will need to be filled up part way in the night so we don't get woken up to a loud beep located by all of our heads.

Children's told us the only way to get him used to this mask and machine was to introduce it slowly and playfully. We tried that a couple of times during the day but while he tolerated it for a few minutes I knew it was going to take a long time and my gut just felt he needed to just try it at night and I felt he would handle it well. So last night was our first night.

We put it on him and right away he became quiet (not like him at bedtime). His pressure is almost as low as it can go right now and the oxygen goes through the machine. He began shutting down in a way, no crying though. This was similat to what he did when we began the oxygen. However, I just encouraged him and asked him if we wanted me to hold him. At first he said "no" but then he allowed me to. I held him until he fell asleep, well actucally we both fell asleep.

About an hour into sleep I moved him onto his bed, which is next to mine. He slept without waking the entire night!! Not even a complaint about the mask. In the morning he woke up pretty cheery too. While this contraption mask is quite cumbersome and awkward, it does seem to help him breath a lot better and get better rest, so far. At nap time again today, he put it on, quieted down quickly and I held him until he went to sleep which was only a few minutes this time and he slept 2 hours without a peep. Now mind you, this is the child that has not had a night like that but maybe a handful of times. Typically he whines, tosses and turns, cries, reaches for me or kicks off his blankets numerous times at least, not to mention the snoring and gasping for air that often happens. None of this has happened since using the CPAP. I pray this continues.

 It is not his favorite thing. However, today when talking about it with the kids he said it was to help his heart. Such a hero of mine. I think I would have such a hard time wearing this mask. I put it just  briefly up to my mouth to see what it felt like and I already felt too confined and like I was choking with it. I always hated it when the put the oxygen masks on me during labor when I wasn't breathing so well. 

Isaiah was also a good sport to pose for these photos. I asked him to get into his bed to take a picture and he climbed right in. I love this little guy.

Adoption Updates

We found out right before Christmas that our dossier in China was finished with the Translation phase of the process and went onto Review. Review is the 3rd of 4th steps for us get our approval to adopt Adelia. So all that means is that it could come within the next couple weeks or months still. LOL

But at least we know it is not sitting on someone's desk not processing at all, which can happen sometimes.

We also got a little update of Adelia with some questions we had asked, sadly no photos this time. Our questions are in black and reply is in red.

1. Weight, Height, Head and Foot measurements? 87cm, 12.5kg, 48cm head, 52cm chest, 14cm foot, 20 teeth 

(She would would be 34 1/2 inches and 27 lbs with about a size 7 shoe size, which means all and all she is a tiny bit bigger than Isaiah, but not by much. So I am thinking a size 2T or 3 T will fit her this summer)

2. Does she live in Foster Family or Institution? She is in foster home. 

(We are very thankful for this, Asher was in foster home and his transition was wonderful and he was far greater ahead in most areas than Ellie and Isaiah were.)

3. Does she speak well and about how many words does she know? She can talk with people well. She can answer most of the questions when you ask her.

4. What name do her caretakers call her? Her nickname is Fu Can.

  ("Fu" means Lotus Flower and "Can" means blooming. We will be using part of all of this for part of her middle name. I am working on finding out the meaning.)

5. What is her personality like? She is outgoing and active. She has strong personality too. If she is mad or upset, she will show to you for sure.

(I think we will have lots of fun getting to know her. We already have 2 other 3 year olds like this, so not surprised by this answer!)

6. What upsets and scares her? She hates to stay alone in the house by self.

(This is good, as we have not future plans to leave her alone by herself for a very long time)

7. Does she still drink milk from a bottle, what foods does she eat? She still uses bottle to drink. She likes to eat pretty much everything and she is not picky.

(We like this answer too as we again use bottles for bonding the first months home together and we are glad she enjoys food too.)

8. Has she or will she have any surgery help for her spine or hip? Not yet.

(We have no idea what her future will hold for legs and spine, but we trust her Creator and Healer. He has a plan for her life, and we are not phased by this.)

9. What makes her happy? Putting beautiful dress, giving her toys, or tell her how pretty she is.

(She sounds like a perfect "Girly Girl" for our house. I can't wait to put her in a dress and tell how her pretty she is!)

10. Does she still have therapy help if so how often? She hasn't got any therapy recently

(Well, she will get plenty of that round here, we seem to live at therapy!)

The other very exciting news is that with the grant we applied for we were chosen to receive a matching grant!!!

Kids for Kyla has graciously offered a matching grant of $750. However, we only have 19 days to match the grant. If you feel inclined to help us in our bringing home Adelia please send your tax deductible donations to the following address: 

Kids For Kyla, Inc

PO Box 336904

Greeley, CO 80633

                                      

Sensory Processing.. What Is It and Some Things We Do Things in Our Family To Help It

It is said by Dr. Kayrn Purvis (a must look into for adoptive families) that most, if not all adoptive children have Sensory Processing problems. What this means is that they did not have an opportunity to develop all their senses in way which their bodies can use them properly or with regulation. Just a small sampling of how babies sensory system is developed healthy is by a rich environment of holding, eye contact, feeding, rocking, singing, bathing, etc. Adoptive children are not the only people that have sensory disregulation. Adoptees just happen to always have a traumatic beginning (adoption starts with trauma for every child, even in the best of the best adoptive situations. Just losing bio-Mommy is traumatic for a baby.) Often sometimes it is even worse with: abandonment, neglect, abuse, starvation, medical issues causing emotional and physical pain, lack of touch and stimulation, which makes it inevitable for these precious children to have sensory disorder. When you add a "hard beginning" or imbalanced brain chemistry (even biological children in the best situations can have) than the sensory system is jeopardized.

I believe every parent, especially adoptive parents, should give their children some special measures of grace and mercy, knowing that their bodies just don't work the way ours do and haven't matured yet to be able to be regulated. Then we should help them regulate and eventually learn to regulate themselves, so they can get along well with others as they grow up. I happen to be a Mama to 3 adoptive children with sensory disregulation, along with several of my birth children having issues with certain sensory categories, some of them all of the senses. So for the last 4 years I have begun really studying this interesting diagnosis, trying to understand it, and seeking help for my children. 

The first book I read that explains it all so well is the The Out of Sync Child. The first website that I found with a huge amount of helpful information, including an awesome checklist that I used to take into our pediatrician for support, is Sensory Processing Disorder. I recommend if after reading my post you want more information to start with those two resources. Even if your child doesn't have a diagnosis of SPD there is valuable information for all parents.

So what are our senses and how do they affect every day life in the way we live, interacting with others and our environments? Any, several, or all of our senses can be disregulated, causing disorder to our nervous system. They can either be "under responsive", "over responsive", or a combination, which is often a pendulum swinging from one extreme to another, and what I find is the most difficult to deal with as you never know what to expect. It becomes especially challenging as well when you have multiple senses that are disregulated.

Under-responsive means that the the sense is not getting enough feedback. So for a child with under-responsiveness to Touch they will be the one who touches everything they come across, seeks messy play like mud, crash and bumps into things attempting to give their bodies more touch and meet that lack of feeling of it, this child will often not feel pain either. Sometimes I have heard of these children getting burned easily, as they just don't feel the injury that occurs instantly like most of us do. The child with the over-responsive nervous system to Touch will be the one who can't stand being kissed, is easily tickled, doesn't like to walk on grass, might walk on tip toes, doesn't like tags on clothing, has a hard time with hair and fingernails being cut etc. And for a child with a combination of these two it might be one hour they don't feel their clothes are all twisted up and maybe even falling off them, but then later that day they are frustrated as their shoes are "too tight" and they must take them off at church. 

Under-responsive to Sound would be a child who likes loud music, might speak loudly, doesn't seem to 'hear' others, and makes vocal noises often. The opposite to that for over-responsive to Sound would be a child that hears sounds in other rooms (like flourscent light bulbs or a barely audible buzzing), covers ears a lot, asking others to 'be quiet', fearful of sounds like a fire truck driving by or grossed out by a siblings chewing sounds (just attempted to deal with this issue tonight). That is where there can also be challenges if  you have two children who are opposites in that sense; one who doesn't hear their chewing loudly and one who hears the slightest crunch from another, ready to gag from it. It can be very frustrating as a parent some times. However, no excuse will be made for anger, dealing with it ungraciously or ignoring it. I have been guilty of doing all those things before and still do sometimes, unfortunately. I am thankful to have a loving God who continues to teach me how to be a better, more patient Mommy and children who forgive me so sweetly.

We all are familiar with the 5 Senses: Touch, Sound, Oral, Smell and Sight. All of those senses can be out of order or regulation at times, for each of us. We all deal with some issue, or have in our lives. For instance, I still can't handle the sound of certain touches on a black board (finger nails for one) it just "kills" my ears and sends vibes up my spine that are literally painful. I also prefer a really dark room to go to sleep or I don't sleep well. Pitch dark would be 'heaven' to me, but I have learned to adjust with what darkness I can get, because I share a room with little ones and have the lights from the alarm clock and computer. I also can not eat certain foods like mushrooms as it just gags me to where I could vomit, but I do enjoy the flavor of mushroom soup without the actual chunks of mushroom in it. So it is definitely an Oral issue for me. I am sure most of us can think of at least some things that we struggle with or did as a child but with maturity and growth we have overcome or adapted to it. I know for me while I still can not handle the chalk board thing, I have overcome the cracking of knuckles that used to do the same thing to me as child and teen. It would send me over the edge if others did that around me. Today, not so much. However, that is just the issue, people with Sensory Processing Disorder have so many things disorganized/disregulated/under or over responsive that they can NOT adapt well and they have a lot of pain and discomfort every single day as it is all just so much to deal with. All of that makes it difficult to function in many situations.

Besides the well known five, there are also 3 other senses that most of us are not familiar with that I want to share. These too are what the SPD child are needing help with and very important to all of our nervous systems and bodies: Proprioceptive, Vestibular and Interoceptive.

Proprioceptive is the sensory input and feedback that tells us about movement and body position. The location for this sense is in our muscles, joints, ligaments, tendons, and connective tissues. A person with this sense in dysfunction is often "clumsy", they might push too hard, fall off of things "purposely" as they don't feel it, play too rough, like tight clothing, have a hard time climbing or riding a bike, have poor posture, bite their nails or chew on things, balance is off (can't stand on one foot) and be the "loud" kids.

Vestibular  is the sense of movement which comes from the inner ear: equilibrium, gravitational changes, movement experiences and position in space are all affected by it. This person loses balance easily or can spin for an hour without getting dizzy, avoids playground equipment or things with height or craves jumping off of high places and swinging high. This person may not even like their feet to leave the ground without stress if they are over-responsive, seeming like they are in a lot of constant fear and anxiety. But the under-responsive child is more the "thrill-seeker", always moving and causing fear and anxiety in their parents.

Interoceptive is the internal self-regulation. So this person may get hot easily or cold easily, or seem to be hot or cold at the "wrong" times. They are not able to regulate thirst or hunger well, either never thirsty or hungry or all the time, or back and forth to extremes. Heart rates can be extreme, same with perspiration.

The wonderful news is that the sooner you can get a doctor to listen to your concerns for your child and prescribe the helpful therapies for them, the sooner you as a parent can learn to help your child, learn to help themselves. We have been doing our different types of therapies for almost 4 years now. We sometimes take a few months off as needed. It is always a fun and exciting time for my children. They all really LOVE it. It is hard work though, their bodies are being challenged in ways they aren't comfortable with and when we do some of the activities at home we do get resistance. I usually do not take "no" for an answer though. When it is time for us to enrich our sensory system, it is often done with multiple children at the same time and we try to just have fun, playing games.

One book I can't recommend enough is by the same author for The Out of Sync Child, is called The Out of Sync Child Has Fun. There are other books out there I have borrowed from the library that are good with a wealth of ideas to incorporate into your play time with your kids.

So with all our different types of therapies we have used in the parenting of our amazing children (Occupational, Physical, Speech, Neuro-feedback, Listening Therapy, Vision Therapy etc...), I am going to share some photos of just a few of the ones we have been doing the last couple of weeks. No family can do it all, at the same time. Pick and choose a few things to work on. Then try something new another week, month or year. It has been especially challenging with darkness coming at about 4:45 in the afternoon for our children along with the much colder temperatures this time of year. They seem to have more bickering, whining and just plain grumpiness about them when inside. We do allow some extra movie time, but that isn't so good, especially for the sensory system either, so we just do more indoor active things like mini trampoline and some of the things I will show below. 

By the way, our Occupational Therapist believes the mini trampoline is a great way to help children transition things in life: before school, after school, before dinner, before bed. It is a great deep pressure activity that helps the proprioceptive part of us regulate. It helps with left/right brain body awareness, vision and vestibular; not to mention muscle tone, endurance, lymph system and over all health. Even if the child can only do 1-2 minutes (we set the timer, or practice ABCs or math facts), it is helpful and useful, but it needs to be a part of every day life. Another tip, is that the large outdoor trampolines do NOT give the same affect and feedback as the mini trampolines. They are good for some of the same things: balance, muscle tone, endurance, hand eye coordination and more. However, I have found that for a lot of my children they can jump and jump and JUMP on the large trampoline and still be hyper when they come inside. It does not seem to give them the deep pressure that they need in their joints for the proprioceptive that is lacking in their day. 

One last thing, before you look at some fun things our family does through our days lately, please keep in my mind, we have days where I am just worn out or the kids resist too much, leaving us with not much done for "therapeutic activities", because I am dealing with tantrums too much.  A therapist says and Dr. Purvis says that we should be doing some sensory activity about every 2 hours. If we do that and feed our kids healthy snacks every couple hours it will save us a lot of battles. Well, some days that just can't happen, okay a lot of days! Ha...But even little bits helps most of the time. With some kids though, it is challenging even on our best days. Some kids do well on some days and bad on lots of other days even when we do a "diet" rich in sensory activities. We do have consequences for continued bad behaviors and we do not tolerate it, always correction going on in our home with all of our kids. I have though a greater understanding of what my children "feel" when their bodies aren't telling them what is what, telling them that their feet are even on the ground, or if they truly physically feel pain when another person gently bumps into them. It is my hearts desire to always think "Is this truly being done on purpose or just a reaction to a body that isn't giving them the proper instructions or help just to function in simple tasks?" That has got to be a difficult thing to deal with every hour of the day. My kids are my heroes, because really they put up with so much!!

 

Here is Elliana riding her little car. You should see her on this thing. She is amazing and I do believe gets faster and faster and more agile on it each day she uses it. She still can't walk on her own yet, but when she uses this little car (which is beginning to break after only 3 months of usage already) she can do just about anything.

All three of the 3 year olds have "cars" They often share, but Ellie is quite possessive of hers. Here they are making a little train, Asher is the leader of this bunch, as he pushes them all around from the back.

These little "Pop Tubes" are pulled out and pushed in and make a funny, popping sound when you use them. They are fun for the helping kids to hear things easier, deal with sounds better that they typically might not like and help with muscle issues along with fine motor skills as well.

We sometimes have scooter "Races" around the island in the kitchen. Bigger kids using their strength to push littler ones around and around, good fun for everyone.

Lenea can do it herself here on this "saucer".

Asher is one of our sensitive to sound guys, so we are trying out the headphones to lessen the noise. However, we haven't figured out how to teach him to be quieter when he wears them. He can't hear us well or hear himself speaking so he yells more when he wears them. Not sure if he got hurt in this photo or mad he didn't get his way. This often happens in these games, just part of growing up.

This is a favorite. We have a swing set up in the basement that the older kids can easily access on their own. This is a "sock" swing that we just bought 4 yards of Lycra and had our OT tie some tight knots in it and attach it to a hook. The kids are helped into it and there is a lot of deep pressure and muscles being used in this thing, plus vestibular.

Here is Lenea swinging in it, which is another excellent way to use it.

This is another one of our swings. It is a rectangular board that can be used side ways or back and forth. It fits these three monkeys just right. I am sitting close to Ellie to insure she doesn't fall off.

We have a "Sensory Bag" that I pull out a few times a week. All the children sit around in a circle. The ball that Toby is using is actually quite hard and makes a lot of tactile feed back. We called it the "Spiky Ball" and each child gets to take turns saying what body park to put it on. The top of the head and inside of the hands are my two favorites. It hurts, sort of, but feels good at the same time.

Here is Ellie doing "Under the Chin, No Hands" This ball she is using is not as poky as the red one above. We don't own enough for everyone so we take turns. She LOVES copying us and does really well at it.

These are sound sticks that you rub together for music. This put on the joints and top of the head or the chin or cheeks, gives a vibrating sensation that feels neat and goes into the joints, just rub them together..(please ignore the laundry in the background..never ending here..the "Sensory Bag is the striped blue pillow case on the ground).

We have these rubber type Vehicles that are in different colors. I am having Asher pick them up with this grabber toy. It takes a lot of coordination to pick it up, hold it in the clasp and then drop it in the correct colored bowl. He got frustrated at first as he couldn't do it and his perfectionism almost put him in a melt down. After I showed him how to use both hands to do it, he was able to accomplish about 20 of them, then Toby finished up the game. This helps a lot with hand and wrist strength which is great for school tasks. Kids with Sensory issues often struggle with low muscle tone in that area, which makes school even more challenging.

Asher is listening to our "Listening Therapy" . We had one of our older OTs show us this. You must only purchase it through an OT helping you. The website gives a good explanation. Asher is listening for 20-30 minutes, again timer set, and doing activities that work on various things.

The Balance Board.. Even Daddy is enjoying the therapy we do sometimes.

This is Ellie at her physical therapy, and her very sweet therapist. Anyway, she gets her walker next week. This one is a tad too big for her, but oh how she lights up with delight when she is on this. She is really strong on it, but her endurance is very low. We can usually get about 5-8 minutes of her using her before she starts saying "All Done".. 

She is concentrating hard at this and you can see us in the mirror cheering her on. I stand on one end so she is motivated to walk to me. I just LOVE seeing her move this way.

Here are a few resources I wanted to share. Please let me know if you have some to share or any questions. I love talking about "Therapy". My friend and I joke about all the different types of therapy our kids "need" and we figure when we are all done parenting them, we just might need our own therapy.

Neat Blog With LOTS of Good Information and Ideas

99 Sensory Activities

Speech Therapy Activities

Eye Exercises

Great Post for ALL Adults to Read on Why Our Kids Can't Sit Still

Partial Diagnosis and Some Things About Elliana

Last week Ellie and Isaiah had their sedated MRIs done. I don't know all the results yet, like Isaiah's cardiac issues and we are still having problems scheduling his surgery for which I hope to update soon just please pray for that to be scheduled soon on a day we can be satisfied about. But yesterday, I spoke with the neurologist about Ellie's brain MRI. I have suspected all along that Ellie had a brain issue going on that was causing her delays and more. I knew in my mother "heart" that it was more than just orphanage delays. It was confirmed that sometime in her very early life ( utero or during birth) she had a state of Hypoxic-Ischemic (Lack of Oygen) which did cause a brain injury, resulting in what seems to be Cerebral Palsy. 

The doctor still isn't sure what is causing her ataxic symptoms. It seems from the MRI, which would show a different part of the brain affected, is all normal. However, ataxia is undeniably there, so she will be having some more tests, metabolic  and maybe a genetic test. It could be something as simple as Ataxic CP, which is the rarest and most complicated form from what I read.

I feel glad that we have a diagnosis. I am hopeful that her brain looks as if the damage was done a long time ago and it is not progressing. I feel especially hopeful that Ellie is doing so well. She is a lot of work, but we see lots of progress and she is a joyful and adaptable little one. She is fitting well into our family and we are so blessed to have her a part of or lives. I am taking each new issue we have to deal with in stride. I give God all the glory. 

One of the issues that has been puzzling and stressful for all of us is that she has been a head banger (the back of her head on the wood high chair, wood floor, the tile wall around the fire place, etc.). She does it when she is mad to get attention. She doesn't seem to feel it. Sometimes she gets in a fit where she follows me around if I am busy and will drop herself to the ground and do this for me to pick her up. It is fine if I pick her up in a few minutes, but sometimes I still don't give her what she wants so then she starts hitting me or trying to head bang me.  It has to stop. I am so tempted to get her a helmet some days. My new plan is to stay on top of her when she does it and I have a port a crib in our dining room (I look as if I run a daycare as we have cribs all over the house these days.) Once she is in one of her fits I will tell her "no" and put her in the crib. I know she will not be happy about it, but I didn't want to put her in the room away from me so I am going to do it close by and just work on teaching her it is not okay to hit her head like that.

On a better note, her walker has been ordered. We did get her orthotics but she doesn't like them much as they are huge on her tiny feet, so it is very awkward for her to walk in them. She trips more right now unless being held just so. She is only using them a few times a day for 30 minutes at a time to build up her ability and tolerance for them.

Ellie is still so smart and cognitively right on target or ahead even, it seems. She must do everything the big kids do and she is very aware if you try to do something for her that maybe a baby would need help with, like hold her spoon when she wants to do it or hold her so she doesn't fall off the piano bench. She pushes you a way and insists, in Ellie fashion, that she can do it herself. So we are learning to accommodate for her physical needs and safety but not take away her dignity. Sometimes as a busy mom I find it hard to balance that, I am learning a lot.

We have amazing therapists working with her. Our Speech, Occupational and Physical therapists all seem to have a gentle, yet encouraging and understanding way with her. They are also each experts in their areas and related to kids with CP. I feel very blessed to have them. 

Some days I feel like all I do is drive the kids to therapy and do grocery shopping. My older kids help me so much and I don't know what I would do without them. I know some of the appointments will slow down once we get a complete diagnosis figured out for Ellie and have Isaiah's surgery all done. 
I counted how many appointments I have taken just children to in the last 3 1/2 months (since coming home from China) and I got 82! That does not include my appointments or Jay taking the kids to a few of them when he was home in the later afternoon. Those are all appointments with therapists or doctors that I have gone to. Right now our average is 8 a week. We have one day for OT (for 3 kids), one day for in home ST (for 3 kids) and one day for PT (for 2 kids). The other days are filled with misc appointments, which right now include a neuro-development psychologist for Elliana. I think in the end it will be a bit of a waste of our time as the evaluation doesn't seem to fit her age level or an adopted child. But we only have 2 more visits so I am finishing it up. It will be good at least to have a starting point to go back to if we need to as she gets older.

I love this sweet little girl. I feel so thankful that God chose me to be her Mommy. I do feel inadequate some days and wonder why He did choose me. However, I am blessed and don't want to argue with God. I know, without a doubt, that she will overcome her disabilities to a great degree. It might not be like a "normal" person but she is perfect the way God designed her to be. Amazing that I get to walk along side her and call her my daughter.

Finally, A Date

Two days ago, after much pestering our Children's hospital that we still did not have a date for Isaiah's surgery, we were able to get an answer.....First he will still be needing a Cardiac MRI to measure and see how much scarring has taken place in his heart from it being sick. They want a starting point before his surgeries and to see if anything more serious is going on (as if it isn't serious enough?) Thankfully, they were able to schedule it at the same exact time that Elliana is having her MRI on September 17th. The things that doctors can pull. It took us 6 weeks prior to get that early time for her and they were able to find a place for him in less than 2 weeks. That is okay, I am not complaining. So Jay will stay with Isaiah and I will stay with Elliana. It should be interesting. Then, because Jay doesn't have much sick or vacation on the books he will go back to work and I will drive the two littles home. I do plan to bring a teen helper though.

Then for surgery, he will have a big pre-op day on October 9th, which includes at least lab work, xrays, social worker visits, tour of where he will be, and a meeting with the doctors. Then the following morning early on October 10th, we have a 6 AM show time for a 7:30 AM scheduled surgery. The surgery is scheduled for about 6 hours, although that is just a guesstimate. It could be less or it could be longer.

He will have the catheterization done first, in the operating room. They will balloon and stent that left pulmonary artery that is too narrow. They said they will likely have to do this in stages, so this is the first stage. Not sure how many or how far apart that will have to take place, but I imagine he will be monitored closely for a long time.

Following the cath, they will do the open heart surgery to replace the leaky valve. That too will require multiple replacements as he grows, since it does not grow with his heart.

They said we should be prepared for him to be in the hospital for about a week. We are still trying to decide all the logistics in how our family is going to manage that. Jay and I will both be there for surgery day. I will stay the first night, at least. Then we will somehow decide how to take turns. A lot is going to depend on the needs of the other children, especially little Mama's girl, Miss Ellie. Mama's heart wants and needs to be in two places. However, with that impossibility, something is going to have to give. I know God will lead us through those steps. I am praying too that he stays only 5 days which was suggested might be a possibility. 

We are also talking through the possibility of getting two hotels rooms by across the street from the hospital. Our insurance will cover one room, Jay has a free night for another one at least, through bonus points. Just not sure if we can swing several more nights in a hotel. But if we did this, we could all be closer, which would make for easier switches at the hospital. (The hospital is about 75-90 minute drive, depending on traffic times, which can be bad.) Isaiah could see all his siblings and them him. We also thought Jay could take the kids to do some interesting and fun things around the city instead of staying home, which will make the time go faster for them and a more enjoyable, memorable time.

So that is the way it looks as of now. Isaiah has a slight cold and cough this week. It is obvious his heart/lungs are struggling a bit more, but he is holding up. Our desire was to have this surgery done with him completely healed before viral and flu season hits. I am not sure that will be the case for this date, but God knows. I am praying against him getting sick, especially at surgery, as they will postpone the surgery if he isn't well.  Please also pray for Isaiah to be free from extreme fear. He has been opening up so much to all of us, even a bit around strangers. His language is exploding and I so don't want this to set him back too much. I know it might and I am okay with that, but he is in this type of thing for the long haul, poor precious boy. Thank you for keeping him in your prayers.

My Sweet Babies

Three months ago we were in Hong Kong, getting some extra sleep from our very long day of travel (it was about 40 hours) and preparing to meet our two new children. I was excited and nervous at the same time. Not knowing what our lives would be like by adding two new children to the mix, ones with significant delays and medical issues and who were older than Asher was when we adopted him. But I was confident that the Lord had brought us to the journey and wanted us to be the new parents and family of these precious children.

Jay and I parted ways to save a week of travel time. It was so hard for both of us not to be at each child's "Gotcha Day". We believed that 5 days would not be detrimental to the attachment that God would be making between us and both of our new children.

The first few days were great, but hard too. Elliana would only let me hold her and do anything for her. And then Isaiah would only let Jay do the same for him. It did get better for Isaiah but we didn't push the issue for Ellie in China. 

She is still quite the Mama's girl, mostly when I have to leave the house for a couple hours. I typically take her with me places I go, shopping and such. But sometimes there are appointments or special times with other children and she does have a meltdown when I have to leave. But Jay is so great and patient with her and reminds me "You go, she will stop crying in 10 minutes and will get to see you return to her. All of that will help her believe you will always come back." It breaks my heart though, poor little thing when I leave. It is pitiful and hard not to shed a tear myself. 

Isaiah often believes when Ellie screams when I leave that he must too, but not always. He is becoming quite a Mama's boy too, which has been good. I was a little worried those first few days when he screamed when I held him and Daddy left. I kept trying to earn his trust and prove to him that I was safe, and fun (maybe not as fun as Daddy though), and would take care of him too. I think today he is believing that. I give the glory to God for answering our prayers.

Asher is doing well. He is getting so big, especially compared to the other two, 3 year olds in the house. He is head taller than Isaiah and 10 lbs heavier. ( And Isaiah is the same weight as Ellie now She has gained 5 lbs in 3 months, Isaiah maybe 1/2 lb and he is 4 inches taller than her. ) Asher's language has exploded. His vocabulary is amazing and his speech is moving right along. Asher is so full of joy and courage and vivacity. He is also very stubborn and likes things to be just "so" or he gets upset. We are working on reminding him that he is safe and it is okay for things to be different. Bringing Ellie and Isaiah into his world has rocked him quite a bit. However, I know it is for his betterment. It is not good for him to believe all the world revolves around him forever. It is good for him to learn to share, as he never had to do that before. It is good for him to learn to be gentle, again never doing that before. He is a sweet boy and thankfully we have good therapists that are teaching us ways to help him be all that God means for him to be. He needs consistency in his day, which we have a lot of the time. It is also good for him to have some days that challenge him so he can learn that not all things or days go the way we anticipate and he will still be safe. He loves to hug his little brother and sister. He is just such a big boy compared to them that we have to be right there guiding his body, so he doesn't accidentally push them over. The funny thing is that even though Ellie is pint size compared to Asher and can't move about or talk like he does it does not stop her from communicating to him she is not happy with him or even give him a swift hit. We are working on gentleness.

Elliana is one busy and strong little girl. She isn't walking on her own just yet, but we are working on getting a little walker for her to use. Right now we are borrowing one from the therapist, but it is a bit big for her. It was such a joy to see her use it for the first time. She lit up the room with her smile and excitement as she was learning to maneuver it around. She will also be getting some little orthotics to give her some stability in her ankles, which will help her use the walker better too. Her speech is slowly yet surely coming. She can only say a very few words and you would have to know her to understand what she was trying to communicate. But she is attempting. She is also still signing words. She has no issues letting us know what she wants. 

It is a blessing to see her world open up. I thank God every day for allowing us to adopt her and bring her out the darkness of the orphanage life. She might have had loving nannies take care of her, which we have no reason to doubt. However, the frustration she must have felt not being "heard", not being held often but sitting in a crib, not being able to get enough food, not having someone to call "Mama", all must have been hopeless.  God is a God of hope...I am blessed to share that hope with her and I am blessed to be a part of the hope she gives us all. She is a fighter, that is what helped her to survive. All odds were against her, but she kept on. Sometimes she is trying to tell me she wants to eat or wants her milk. Both of those words she signs well.. But while I am holding her, doing something else for another child, she will grab my face and make me look into her eyes and do her sign again. Sometimes I have to make her a wait a little longer, but I try to not make her wait long. Parenting adopted children is different than biological children. We have to earn their trust. We have to show them time and time again, often through food as that is huge on the bonding scale, that we are there for them and will meet their basic needs always! It is a process that we will always be adjusting and considering the root of the child's needs and how that will affect our relationship with them. But today when she signs her "milk" with her little grunt and forcing me to look into her sweet brown eyes I "hear" that she is begging me to take care of her, to love her like a mother should. 

Isaiah is our small, sweet, quiet but not as quiet as before, almost 3 year old. His birthday is in three days! He has opened up so much the last month. It has been a huge transformation. He was quiet, reserved, serious and whiny a lot of the time the first few weeks and even 2 months he was with us. Something has changed though. We are finally seeing that amazing personality that we could "see" in the photos we got while we were waiting to meet him. He is talking, talking and more talking. He  is bossy, telling his siblings "No" and copying things I say. For example, Ellie is standing up on the couch and I say "Sit down, Ellie" and he copies my exact words right after me. He is sleeping so much better. I think the oxygen is contributing to that too, but he doesn't wake up crying with us not able to pull him out of it for a while. He is often smiling or giggling with his siblings.

 His biggest issue is his heart. He has some days that are harder for him than others. And sickness is the biggest culprit. When he is sick it just wipes him out. He is not very active anyway, but when he doesn't feel good he just lies around and wants to be held. 

I do have an update on his heart. We sent in three different requests to top hospitals about a second opinion. We finally got all three recommendations the earlier part of last week. Two of the facilities concurred, for the most part, with our hospital here. However, the top surgeon at Stanford did not agree with their treatment plan here .He felt a different approach was needed, in fact, even stated in his letter the other would likely not work. His approach would be a lot more aggressive but likely very proactive for the future of his lungs and heart. So we very much considered his plan and were beginning to prepare our minds for travel to Palo Alto, CA, which is very close to where Jay and I grew up and lived up until our 3rd year of marriage. 

The entire time we were in contact with Isaiah's cardiologist keeping him in the loop. After we let him know we were considering this other approach he took the information to the team here.We quickly heard back from him that they still agree with doing the less evasive way first, would be best for Isaiah. If the other surgery failed we would be left with little options for helping his heart. He said that they did reevaluate if his valve needing replacing now or later and they felt now would be best, which is what all three other hospitals suggested and our team was not ready to do yet. So we are thankful that the listened to us and were patient with us as we considering other alternatives for Isaiah.

I had been feeling while we waiting for the doctor to let us know that maybe going to Stanford would not be best for now. At first, I was very much thinking that way but I kept asking God to reveal the right path and give Jay wisdom and us unity on the decision. It was then that God began reminding me He was in control and I needed to have more faith in His healing of Isaiah and not just the doctors. If we were to have Stanford perform the more aggressive option we weren't leaving as much room for God to show His hand in it all. If the less evasive surgery was to be done and still not be enough for Isaiah God will work his miracle and be shown sovereign. That same day that I was hearing God remind me of his power, we asked one the of the other hospitals to look again at Isaiah's record and look at the Stanford surgeon's recommendation for us, giving us another second opinion. (This would be Boston, the #1 heart hospital in the Nation) They still concluded that would not be what they would do. It was all coming together, the peace  that we were to say here and take our cardiologist's advice for Isaiah at this time. Jay and I were in unity on the decision, which we always wanted to have.

So in the coming weeks, still no date planned, he will be having a cardiac MRI and lung scan and  a heart catheterization for a balloon and stent procedure on that left pulmonary artery. The intent is to take off the pressure from the very enlarged and sick Right Ventricle. He will also have his valve replaced which was his original birth defect. They will closely follow him after that surgery with more caths, ballooning and stenting to help that artery become larger and work more efficiently in the coming months, years. We so appreciate your prayers for him. It is going to be a long road. He will also be looking at more valve replacements with open heart surgeries, as the valve doesn't grow with him. 

My prayer is that he will not have fears and that he will not lose his sweet spirit from all of this medical trauma that has taken and will take place in his little life. Isaiah too is a fighter. We know that the nannies that so loved him did not realize how sick he really was and we are ever so grateful that the Lord brought him home to us in the timing that He did. Isaiah would not have gotten help in China until it was maybe too late. Today, here in our family, we are able to closely monitor his health with our excellent doctors and above our Isaiah's Creator and Healer.

I will post when I have a date scheduled for his surgeries. God is good, all the time. All the time, God is good.

Isaiah's Catheterization and Next Steps for His Heart

Last Thursday June 11th, we left our house before the sun was up and drove the 90 minutes to our Children's Hospital. It was Jay, Eliza, Ellie, Isaiah and me. We took two cars knowing that Isaiah would likely stay the night (which he did).

After we checked in with insurance and wrist bands, we went upstairs and nobody was at the desk for the Heart Center. We were told to go to the intercom to ask for entrance into the pre-op room. Uh...where was that? Thankfully, after walking around a few minutes we found someone else going in there and we walked in and said "not sure if we are in the right place?"...they already knew who we were, didn't even ask our name and just took us to his room.

I had written up a Care Plan for doctors and nurses to read and follow for Isaiah, knowing that medical anything was traumatic to him and attempting to be his "voice". The nurse right off the get go said she had read it and would give him as much space as needed. I think she did pretty well, until following the cath when he was waking up and I had explicitly said that I was to only feed him..she gave him a bottle.. but I politely took it out of her hand and that didn't happen again.

All the doctors and nurses came into to examine him, which I think was the worst part. It is a training hospital so it was at least 5 people who did this, which I feel was not necessary and may push for that not to happen next time. By the 4th person he was in tears. I don't think the Fellow AND Nurse Practitioner need to listen to his heart, when the Anesthesiologist, Nurse and Cardiologist all MUST.

They took him back to the cath lab, Jay got to carry him until he was asleep. They were very good at updating us every hour, very promptly too. The first hour we were told took all that time just to get the IV in and into the arteries. They said his veins were very "spidery" and that is normal with heart kids. Poor guy had 9 attempts on the left side.

 The 3rd hour we were told they were ballooning the left pulmonary artery, not once but twice to see what they could do. Then just 30 minutes later they said they finished up. I had a gut feeling that they weren't able to complete the procedure since it ended so quickly, but hoped I was wrong. The doctor soon came out with many pictures and explanations. He explained each photo step by step and answered our questions as we went along.

The first major issue we saw was the size of his right chamber. It is approximately 4 times larger than it should be, which seems to be a secondary issue due to 2 other major problems...the pulmonary valve leakage (from his original birth defect of Tetraology of Fallot) and a very narrow left pulmonary artery. It was less than 1 mm wide when it's counter part is 8 mm wide, to give you an idea of what it should be. 

Back to the hypertension on the right chamber: It is so large that the "pump" is not pumping well at all. The doctor called it stiff and sloshy. They put die into the heart with the procedure and you can see on the photo that it just pooled into the bottom, as the heart could barely pump it out. 

The valve that takes the blood out of the right chamber has already been "repaired" in China. I say this as it really can't be repaired, it needs to be replaced. But the doctors have figured out a way to make the heart work, it seems, without replacing it, until the child is much older, finished growing and can have a valve replacement. This is what we originally thought his condition would be like. All of that should be successful in Tetralogy children, but only when the other aspects of the heart are doing well. Isaiah has a very narrow pulmonary artery going to the left lung. Like I said before, it was less than 1 mm when it needed to be close to 8. So they ballooned it up to 4 mm and had originally planned to put a stent into that artery to get the blood flowing to both lungs and take some pressure off that right chamber. Upon going in there and seeing how sick his little heart was and just not functioning properly at all, they realized it was not just an easy fix. In fact, the doctor said it was heart failure. Huh...Did I just hear that? Yep, "heart Failure!".. What that means is that simply his heart is not pumping like it should and it is in a dangerous situation. So there was no stent put in, there was a small biggering of the artery..it was up to 2 mm after the procedure. 

So now I know why my instinct kept telling me, even from our first nights with him when he was breathing heavily, coughing, whining and restless, that it really was due to his heart. I didn't listen at first, just "thinking" it was adjustment, grieving, fears etc. But as time went on, I did start to ask the doctors about it. I was told by our pediatrician and cardiologist that it was not because of his heart. I trust our doctors and have a wonderful relationship with our ped. But they were both wrong. I have a good friend who let us borrow her son's pulseox for a couple of days. That is when I monitored his sleep, because of a very minor cold was putting him into screaming a lot through out the night and he just hadn't done that before. I really felt the nudging that it was more serious than just fears or grief. His O2 levels dipped down into the 70s and mostly hung out at low 80 and 81. So now, the doctors agreed he needs to be on O2 at night and as tolerated during the day. 

So as far as we know now we have two options:

They can go back in through the cath and do what they originally planned, putting in a stent. Or they go straight to open heart surgery and replace the pulmonary valve so it works properly, not leaking, which in theory should make the blood flow more easily out of the chamber and into both arteries, even forcing the small one to open up more and in the end taking the stress off the heart and not causing hyper tension on that right chamber. There are risks with both, probably the valve being the most risky. If his heart wasn't so large with little proper function on that right side, it would be an easier surgery. But that raises the risks greatly. Once he has the new valve, it will need to be replaced as he grows. For that we are not sure how often either. But from what I understood, if they choose to do the balloon and stent, it very well might close off, stunting the growth of the artery altogether or it might not take the pressure off the right chamber and he will end up with surgery replacing the valve anyway. 

We needs lots of wisdom as to what God wants us to do. We might seek a second opinion. We are "supposed" to hear something next week. The cardiologist has been great about answering my emails. He just said this week he was talking to several people about what is best for Isaiah. But it sounded as if he was thinking the replacing of the valve needed to be soon and was our only option.

Last week I had some mother fears. I am processing them with the Lord's help and prayers of others. I don't want our little, precious boy to go through this anymore!! I know God has called us to this and called us to walk alongside him as he faces this challenge. Many times as a parent we forget it is our children who are the ones who are really brave and have the courage. They are the ones walking through their tragedy. This little boy, abandoned at 6 months of age, has been through so much in his short life already. I don't want to figure out God's reasoning, I just know I trust His sovereignty. Who am I to complain in my heart at all that I am walking this path?. No, I am thankful today for each breath he has and heart beat his heart makes. I am realizing more today that life is a gift and we should treasure it all the more. If the Lord allows us the privilege of walking along this journey with our new son,  into the world of multiple open heart surgeries, daily oxygen, etc..so be it. I am so ever thankful that I get to be mother holding his hand, wiping his tears and teaching him to seek the Lord through it all.

 Pre-cath...just waiting and getting examined...again and again and again...

 Not the greatest picture quality, but here is my corny husband all geared up to take Isaiah back to the cath lab. Isaiah was given Versed at this time to help him relax. And he was laughing at his Daddy quite a bit.

 Ellie being treated like Royalty and practicing her little wave from the wagon rides with Daddy, while we waited the 3 1/2 hours for Isaiah to be done.

 Isaiah upon waking up for the cath..He had to lay flat for 4 hours.. he drank 2 bottles of water and one bottle of apple juice. Poor guy was so thirsty, but we were being careful for him not to throw it up.

 Sweet Isaiah today, with smiles even wearing his O2. He knows it makes him feel better.

Medical Update

The last few weeks have been big in adjustment, but really going well. God has been gracious, patient and merciful to me as I learn to mother 2 new, sweet, needy children. It has really been physically and emotionally exhausting some days, but I KNOW with prayers of others God has given me an extra measure of strength. I am so thankful for that, and it keeps a joy in my heart. 

I knew parenting these 2 babies was going to be hard work. The first few days Jay went back to work, I thought, "I don't know if I am cut out for this task. This is hard!" However, the Lord reminded me that He called me to it and He picked me to be their mother through adoption. And my strength was renewed and I got back up to my task of just doing what I knew to do as a mother to many babies before. Yes, it was double and triple hard some days, (still is). I just can't explain the wisdom, patience and love He has given me through out most of my days, but just tell you that,  "It IS from the Lord! and I CAN do all things through CHRIST, who strengthens me!"

Well, onto Isaiah and Ellie's medical stuff. 

Last week we had 2 important appointments. Ellie saw the orthopedic surgeon and Isaiah saw the cardiologist. Ellie went in last Monday and then had xrays taken. We finally heard the findings last night. She has a deformed right fibula, hip dysplasia and mild scoliosis. Her right leg is significantly shorter (although I forgot to ask by how much).

We are still not sure what the future holds for all of these. For now it is "wait, watch and further investigate" strategy. Because the doctor thinks that none of these should keep her from walking and from the other issues of her delays and inability to use her body, we have an appointment scheduled at our Children's Hospital in 3 weeks in Neurology. Then we will look at the whole picture. My mother gut tells me something is not right. She is cognitively smart, but can't seem to make her body do what she wants it to, and it is not completely orphanage delay. She started physical therapy last week, will start occupational next week and will start speech in 2 more weeks as well. More therapy..therapy..therapy..We do believe God has her in His hands and we trust that He will heal her.

Isaiah saw the cardiologist last Tuesday. Poor little guy obviously traumatized from previous medical procedures in China. Who knows all that was done, but we know at least two open heart surgeries before the age of 2. We had many quiet and loud tears at that appointment, but he was a trooper and with a snack and in Daddy's arms we had him smiling at the end of the visit.

Unfortunately, his results on the echo cardiogram were not favorable. I had been concerned, as at night time he is often restless, heavy breathing, whiny and coughing. Not all night, but it is clear he is uncomfortable. His echo showed that his pulmonary valve, which was repaired because of his Tetrology of Fallot birth defect, is still not functioning properly. There is some back flow of blood. Then the exiting blood to the lungs is also not going through the proper pathway, the pulmonary artery of one of the sides. In fact, the doctor couldn't even see it on the echo. He suspects it is too small or blocked. It is my minimal understanding that the body will still make pathways to get blood to the lungs and that is why he is still alive and breathing. All of this is causing hypertension on the right side of his heart, which is supposed to be 1/5 of the blood pressure compared to when we take it on an arm or leg. His about equal right now which is obviously too high. His Saturation % during the day at both doctor visits he had was still in low 90s. So the cardiologist advised us to have him go through a heart catheterization before a month's time. 

The day after we left Isaiah came down with a minor cold. No fever, just a little mucus drainage and small cough. That immediately increased his restlessness and coughing at night. We had been told by the nannies that since his 2nd surgery he was doing well, "except when he gets sick, it was harder for him to get over it". So I had mildly been prepared for this. But I was suspecting asthma. 

However, a thought had come to me to check his O2 levels more regularly and just see what is going on. By the 4th day of this minor cold (which was still minor) he was just not very happy and extra tired. He even took a morning nap with Ellie which he had never done before. A friend of mine has a son with a heart condition that requires lots of monitoring and I thought she might be able to help. She has a Pulse/Ox monitor that she graciously loaned to us for a couple of days. I used it when they brought it over and his O2 was at 89. I put him down for nap, just a couple hours later and in about 10 minutes into sleep it had dropped to 83. I knew I needed to monitor him at night. I put it on his foot that night and watched as best I could while sleeping myself. What I saw was a dramatic decrease in O2. It begins somewhat okay (88-90 when first laying down awake) but then it dropped as low as 75 that I witnessed while sleeping. The average number was 80-82 through out the night. When he woke up it quickly went up to 90. The doctor wants him to be over 88. So this definitely explains why he is having trouble when sleeping. I emailed the doctor who said they want him in next week and not to wait for his cath longer that that. I was so not ready for this and I know Isaiah isn't either. I trust that the Lord knows as He knew this was coming so I am resting in that.

So please pray for next Thursday at 8 AM Mountain Standard Time when Isaiah has his procedure. Jay, Ellie, Eliza and I will all go down with him for the day and I "think" the plan is for Jay to bring Ellie and Eliza home and I will stay with him if they keep him overnight. It was a hard decision as I really wanted to be with him. He is really beginning to bond with me but it is obvious he doesn't trust easily. I also don't know want to leave Elliana. Jay and her are attaching well, but she is slightly more a Mama's girl which is good and I don't want to lose that. It is important that these babies attach with Mama just a bit more, like a newborn would. They didn't get 9 months in the womb with me, and 12 months nursing. So I have to work for it, for the trust, for their love. Jay does too, but research shows if they have a strong attachment with Mama the other relationships will be healthy and secure too. Again, I cried out to the Lord today, surrendering that to Him alone. He knows what it takes to heal my babies and to make a strong attachment with their Mama and Daddy. He will do it in His way, not mine and I give Him that too!

So all your prayers are appreciated about all of the above. Truly it has been those prayers that are evident through this entire adoption journey with Elliana and Isaiah. Thank you!!

Surgery Up-date

I am sorry I didn't get this updated sooner. We had a few rough days, but not horrible for him. Then we had a birthday celebration and just life right after his surgery. So days have been very busy.

Asher's surgery went amazingly well. Prayers were answered big time. He is being healed, from the inside-out. I have been praying for complete emotional and physical healing almost  every day we have known him, even before adoption. God is so good!

When we arrived at the surgery center he was great. The nurses started pushing some typical things like weighing him (which he typically fights), putting on "their" Pajamas (which wasn't going to happen) and taking vitals etc. I had to speak up a little forcefully at first as they were just moving and a bit rushing him and that was not making the atmosphere feel nice, but they did end up backing off and became very cooperative and even kind about it, once they understood where he was coming from. They gave him the Versed before surgery, which last time made him a little aggitated. I was a bit worried as last time Daddy was there, and this time it was my daughter, Makenna and myself. But he ended up being fine with it and just wanted to sleep. He was even asking to lie down on the hospital bed that he didn't want to touch at first, because he knew he was so tired and wanted to sleep. The surgeon was about 20 minutes late (Asher was his first surgery that day), but he still came in and asked how we were doing and prayed over Asher. I can't say enough about what a kind and wonderful man for a surgeon we have. He also happens to be an amazing plastic surgeon.

They allowed me to walk him back to surgery and even hold him when they put him under. Then I was quickly ushered out. The surgeon had warned me that even though he expected to take about 2 1/2 hours that if it was longer it was only because he was a perfectionist and wanted to take his time. Well, the surgery lasted about  3 3/4 hours. I was fine about it. Makenna and I read and chatted.

We spoke with the surgeon afterward and he said it went great. Something that China repaired wasn't done correctly and he fixed that. Then about 30 minutes later we got to be with Asher. He was quite sleepy for about an hour. But the nurse kept encouraging us to rouse him and wake him. This was quite different from the hospital stay from the previous surgery, as he slept solid for 2 hours there and they didn't really encourage us to wake him as long as he was doing well, which he was. Surgery centers seem more like they want you to move to recovery so they can send you home.

He woke and ate 2 Popsicles, then began crying his tummy hurt. The nurse gave him some anti-nausea medicine. As we were getting ready to go home, he asked for water, drank a lot and then promptly threw up just as we were getting him dressed in his clothes, all over me. (He also threw up in the car on the way home, but we were prepared and it didn't make too much of a mess thankfully.) 

The nice thing about after this surgery was that he was very calm and not agitated like he was following his last surgery. He was not stressed about where he was or the nurse even touching him and taking his vitals like he was before. The whole experience was night and day different to him. So I am so thankful for that and know it was your prayers and God's hand in it all.

He did end up sleeping again when we got home at about 3 until 5, which I did too. Then he went to bed at 9 and slept until 5 without a peep. He really needed that! We both did. He did have quite a bit of pain the first few days and tummy aches. We got anti nausea medicine this time which helped. We kept him on pain meds for about 3 days. His biggest challenge is that he didn't want to really eat at all. He says "Lip hurts". But every day is getting better and he complains less. He has only been on Tylenol since day 3 post operation.

He saw the surgeon yesterday which he said he looks great. He did say one part of his nose already "fell" but it is not obvious to me and I think the surgeon is just a perfectionist as I think he looks great. But I thought he looked handsome before surgery too.

He is a fighter and is doing so well overall. Just 2 days after surgery he was almost bouncing off the walls with energy, I had to slow him down. He kept doing little things to hit his mouth and nose and then would cry and sometimes a little blood would come out. I was afraid that that he was going to cause it to open up. We are past that part now and things are getting back to normal. The doctor said no more surgeries for a while. He will have a bone graft at about 9 or 10 and maybe another lip/nose revision after that. Then we will just have to see what is needed at later times as he grows.  

He will still be in speech for a long time. However, he is progressing so nicely! He is finally making some consonant sounds that he could not make even 2 months ago, like B and P and even sometimes T. We have to understand that he didn't have the opportunity to progress in making sounds like a baby and toddler do until he was a 28 months old. So he has to progress just like a baby would in making sounds and connections with his words. He has the ability to do it now, but he also has to unlearn some habits he picked up along the way prior to his surgery. It will come with lots of patience, growth and practice. 

He can be quite stubborn and not want to cooperate with speech practice some days, typical 2-3 year old boy. Both of his therapists are great and know how to get his  cooperation and they both do it so differently. He is about done with Early Intervention (he turns three in late February), but we are going to try and see if our insurance will still pay for our in-home therapist that he has been seeing. If not then we will likely drive up to the therapist on the Cleft Team. Unfortunately, she is 30 minutes away, so not our first choice, especially when Elliana and Isaiah come home this summer.

Again thanks for your prayers! We are so thankful that he is growing and thriving. We are so blessed.